Patient from Hell: Recent Episodes
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Author and motivational speaker Susan Svoboda shares her raw, scientific, and deeply personal journey through breast-cancer diagnosis and recovery.
Discover what she learned about modern cancer science, the hidden truths about lymph-node surgery, and why self-advocacy might be the most powerful form of medicine.
00:00 — Why she told no one about her breast cancer
01:30 — The story behind “I Hate the Color Pink”
02:45 — The mammogram that changed everything
04:20 — How her husband handled the diagnosis
06:00 — Finding the right surgeon through one bold question
07:45 — A tough conversation about body image and loss
10:00 — Running as a path to healing
13:00 — Post-surgery recovery and rebuilding strength
14:50 — What science says about lymph nodes and lymphedema
16:30 — How journaling became a lifeline during treatment
18:30 — Writing as therapy and empowerment
19:35 — Becoming your own best health advocate
21:10 — Her top advice for patients and caregivers
22:15 — Was she the “patient from hell”?
23:00 — The biggest lesson: learning to let go
23:50 — Finding purpose and helping others through her book
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Connect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @MantaCares and visit our website at MantaCares.com for more episodes and updates.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
In this episode of The Patient From Hell, host Samira engages with Charlotte Bayala, a caregiver who shares her journey through the challenges of supporting a loved one with cancer. The conversation explores the emotional and practical aspects of caregiving, the lack of agency often felt by caregivers, and the importance of self-care amidst the demands of the role. Charlotte reflects on her experiences, the lessons learned, and the strategies she developed to navigate the complexities of caregiving while maintaining her own well-being.
Chapter Codes
00:00 Introduction to Caregiving and Its Impact
05:37 The Shift: Diagnosis and Role of Caregiver
10:30 Agency in Caregiving: The Unasked Role
14:15 Survival Mode: Caregiver's Protective Instincts
18:19 The Caregiver's Learning Curve
25:44 Trial and Error: Navigating the Caregiving Journey
32:24 Rapid Fire: Insights and Reflections
Takeaways
Caregiving often comes without a clear role definition.
The transition to caregiver can be overwhelming and unexpected.
Mindfulness practices from yoga can help caregivers stay present.Caregivers often operate in survival mode, balancing protection and care.
Agency in caregiving is often unacknowledged, leading to stress.
The caregiver's role is strategic, requiring foresight and planning.
Caregivers need to prioritize their own health and well-being.
Trial and error is a significant part of the caregiving journey.
Communication with healthcare providers is crucial for effective care.
Caregivers should be recognized as integral members of the care team.
Subscribe and hit the bell to stay updated on future episodes of Patient from Hell.
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @MantaCares and visit our website at MantaCares.com for more episodes and updates.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
In this episode of The Patient From Hell, host Samira Daswani speaks with Neal K. Shah — TEDx speaker, former hedge fund manager, and now social entrepreneur reshaping the caregiving economy.
After building a multi-billion-dollar hedge fund in his 20s, Neal’s life changed dramatically when cancer struck his wife. As her primary caregiver, he experienced firsthand the crushing financial toxicity, social isolation, and emotional toll caregivers face.
Today, Neal runs social enterprises tackling the caregiving crisis, has authored Insured to Death, and is exposing how AI is being weaponized by insurance companies to deny life-saving care.
This conversation covers:
The untold burden on family caregivers
Why health insurance often fails in catastrophic illness
How financial toxicity devastates households
The rise of AI-driven claim denials
Neal’s mission to “arm the resistance” with AI tools for patients
If you’ve ever wondered why healthcare feels broken — or how we can fix it — this episode will leave you informed and inspired.
🧑💼 Guest Bio
Neal K. Shah is a TEDx speaker, investor-turned-social entrepreneur, and caregiver advocate. Formerly a hedge fund partner by his late 20s, Neal left finance after his wife’s cancer battle to focus on fixing the broken caregiving system. He is the founder of multiple social enterprises, a national leader in the caregiving movement, and author of Insured to Death: How Health Insurance Screws Over Americans and How We Take It Back.
⏱️ Chapter Timecodes
00:00 – Introduction & Neal’s background
02:00 – From hedge funds to caregiving
05:00 – The hidden burden on family caregivers
08:00 – Why caregiving is isolating and overlooked
10:20 – ICU, coma, and decision-making as caregiver
14:00 – How caregiving changes your personality
16:20 – The financial toxicity of illness
19:00 – Writing Insured to Death
23:30 – Weaponization of AI by insurers
28:40 – Medical bankruptcy and broken insurance
31:15 – Singapore vs. U.S. healthcare models
34:30 – Positive uses of AI for patient advocacy
37:30 – Rapid fire: rights, myths, and advice
44:00 – Closing thoughts
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @MantaCares and visit our website at MantaCares.com for more episodes and updates.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Grief is not one-size-fits-all. In this episode of The Patient From Hell, grief coach Holly Gainsboro breaks down anticipatory grief after a cancer diagnosis (incl. glioblastoma/GBM), the harm of “be strong,” and simple daily practices that actually help patients, caregivers, and clinicians. We cover how to talk to kids after diagnosis, caregiver exhaustion, why grief isn’t linear, and what to ask when seeking a therapist with real grief training.
About Our Guest:
Holly Gainsboro, founder of Golden Heart Grief Support & Education, is a Grief Coach/Support Specialist & Grief Educator. Holly’s late husband, Steven, died in December 2010, from glioblastoma. Holly began her work in the grief field more than a decade ago, earning her first certification as a Grief Recovery Specialist. She continued her studies and received her certification as a Grief Educator with world renowned grief expert, David Kessler, as well as being certified as a Grief Support Specialist from the University of Wisconsin. Holly believes that learning never stops and recently completed another training and certification as a Grief & Loss Provider with Claire Bidwell Smith. Holly recognizes that grievers don’t need to be fixed, they need to be heard, seen, and supported. Holly’s passion/purpose is to be present for those who have experienced losses by guiding them through the feelings of grief and leading them to a place of peace and hope while honoring their relationships/experiences. Holly says," I normalize grief and invite growth and learning throughout the journey using a heart centered, and holistic approach.”
Holly works 1:1 with women who have lost a loved one to a brain tumor or are caring for a loved one diagnosed with a brain tumor, facilitates grief support groups, and leads grief education workshops for various organizations. She is the co-host of the podcast Creating Space for Grief & Hope. What you’ll learn:What anticipatory grief is (and why it’s not just anticipating death)How to support a spouse/partner & children after a GBM diagnosisThe difference between platitudes and evidence-informed supportPractical tools: movement, journaling, nature, hydration, restWhy feeling your feelings = real strength
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @MantaCares and visit our website at MantaCares.com for more episodes and updates.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Tags:
grief, anticipatory grief, glioblastoma, GBM, brain tumor, cancer caregiving, caregiver support, oncology, oncology support, patient advocacy, grief coach, grief educator, grief myths, grief practices, palliative care, bereavement, grief tools, cancer diagnosis, mental health in medicine, The Patient From Hell, Manta Cares
Samira is joined by legal expert, patient advocate, and author Rebecca — a powerhouse voice in the cancer and healthcare world. Rebecca shares her unique journey from big law to breast cancer advocacy, and offers practical, game-changing advice for patients navigating diagnosis, treatment, insurance, and employment.
Whether you're newly diagnosed, supporting a loved one, or simply want to understand your rights, this conversation is a masterclass in layered patient advocacy.
👉 Subscribe and hit the bell to stay updated on future episodes of Patient from Hell.
About Our Guest:
Rebecca Bloom is a Yale College and New York University School of Law educated patient and workplace advocate. A former workplace and benefits attorney, Rebecca’s longest and proudest affiliation is with Bay Area Cancer Connections, where she has served as a patient advocate and healthcare, insurance and workplace advisor for women fighting breast and ovarian cancer for 25 years. Rebecca was a contributing writer and editor for Breast Cancer in the Workplace, published by the Northern California Cancer Center in the early 2000s. The book has recently been updated, expanded and reissued by the Cancer Prevention Institute of California and is now titled Working with Cancer.Rebecca serves as a listener, learner, supporter and advocate for the clients of Bay Area Cancer Connections, primarily one at a time but also in groups that she’s led and conferences where she’s presented.
When she worked as a lawyer, her clients were companies, and she brings that perspective to her interactions with BACC clients and other people on whose behalf she advocates. Her knowledge of the complex rules that employers, insurers and medical providers follow, as well as the dynamics and incentives that exist between stakeholders helps her give the women she supports a constructive and comprehensive foundation so that they can integrate all available information with comfort and confidence and focus on recovery and wellness. Rebecca is also a professional storytelling coach, helping her clients get their stories told and shared.⏱️
CHAPTERS / TIMECODES
00:00 – Cancer Bills, Greed & the Broken System
01:00 – Meet Rebecca: Legal Ninja-Turned-Advocate
03:50 – What Changed in 26 Years of Oncology Work
06:45 – Why the Maze Is More Complex Today
09:50 – The Rise of the Medical Industrial Complex
11:40 – How Tech Complicates Cancer Care
13:00 – The Story Behind Her New Book
16:00 – Advocacy Success Story: Karen’s Journey
20:00 – How to Talk to Insurers & Employers (Magic Words)
23:30 – Legal Advice: Your Benefits Are Yours — Take Them
26:00 – Drafting Your Support Team (Like a Startup CEO)
28:40 – The Hidden Risk of Insurance Plan Changes
31:15 – Rapid Fire: Insurance, FMLA, Disability, COBRA Explained
38:55 – Other Hidden Workplace Benefits Most Patients Miss
40:35 – If You Could Fix One Thing About Healthcare...
41:30 – What Being a "Patient from Hell" Really Means
42:00 – Closing Thoughts and One Thing to Remember
Takeaways:
Rebecca Bloom's diverse background includes law, advocacy, and storytelling.
Stories of hope can empower patients and provide valuable insights.
Understanding your rights as a patient is essential for effective advocacy.
Insurance complexities can create barriers to care that patients must navigate.
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @MantaCares and visit our website at MantaCares.com for more episodes and updates.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Samira and guest Chris Schuler delve into the emotional and practical challenges faced during the cancer diagnosis and treatment process. Chris shares his personal experiences as a caregiver for his father diagnosed with glioblastoma, highlighting the confusion and fear that accompany such news. The conversation explores the importance of understanding treatment options, the role of family in caregiving, and the complex emotions of grief that arise during this journey. Chris emphasizes the need for clear communication and advocacy in healthcare, as well as the disconnect between the information provided and the emotional realities faced by families.
About our Guest:
Chris is a staunch brain cancer awareness advocate. He was the primary caregiver to his late Dad, Donald Schuler, who was diagnosed with GBM in July 2021. He works closely with organizations across the globe, amplifying their critical work and building key relationships to further improve outcomes for patients.
His career has spanned almost two decades through philanthropic roles in a variety of industries including non-profit, public and private higher education, and healthcare.
He's currently working with Cure Brain Cancer Foundation, an Australian non-profit dedicated to improving outcomes in brain cancer. He's a Venture Partner with Varia Ventures, working to raise awareness for emerging venture funds dedicated to uncovering and funding innovative discoveries to improve brain health. He also works closely with SageMedic, a precision oncology start-up supporting patients looking for the most effective treatment for cancer.
Takeaways
Chris felt a sense of responsibility to support his parents after the diagnosis.
The emotional impact of a terminal diagnosis can be overwhelming.
Understanding treatment options is crucial for caregivers.
Grief can manifest differently in family members during a health crisis.
Clear communication from healthcare providers is essential.
Many caregivers feel lost in the healthcare system.
The binder provided by the hospital was not helpful for Chris or his mom.
Caregiving involves navigating complex emotions and responsibilities.
Patients and families need to advocate for themselves in medical settings.
The experience of receiving a terminal diagnosis is traumatic and disorienting.
The feeling of helplessness is a common struggle for caregivers.
Chris's mother chose not to Google her husband's condition, living in the moment instead.
Chris believes there are hidden joys in caregiving, despite the challenges.
Chapters
00:00 Introduction and Context of Caregiving
02:54 Navigating the Diagnosis Process
05:54 The Emotional Impact of a Terminal Diagnosis
08:50 Understanding Treatment Options and Next Steps
11:53 The Role of Family in Caregiving
15:07 Grief and Its Manifestations in Caregiving
17:56 The Disconnect Between Information and Understanding
25:00 Navigating Cancer: A Personal Journey
31:48 The Search for Answers: Clinical Trials and Second Opinions
39:51 The Emotional Toll: Grief, Faith, and Resilience
46:49 The Caregiver's Perspective: Finding Joy Amidst Sorrow
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @MantaCares and visit our website at MantaCares.com for more episodes and updates.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Vicki McGrath, an exercise physiologist specializing in breast cancer recovery. They discuss Vicki's journey into creating exercise programs for breast cancer patients, the importance of movement and setting achievable goals during recovery, and personal stories of patients who have benefited from her programs. The conversation also covers the challenges of lymphedema, advice for newly diagnosed and metastatic patients, and the significance of functional fitness in enhancing quality of life post-treatment.
About Our Guest:
Vicki McGrath's career is a testament to her dedication to both fitness and cancer care, as well as her unwavering commitment to improving the lives of those affected by health challenges. With over 30 years of experience in fitness and wellness, Vicki has developed a deep expertise that spans a variety of populations, from individuals with special health needs to those recovering from cancer. Her extensive qualifications, including certifications from the American College of Sports Medicine (Certified Cancer Exercise Trainer, Health Fitness Director, Exercise Physiologist, and Exercise is Medicine) and her specialization in cancer exercise, position her as a highly skilled professional in the wellness community.
In 2024, Vicki's passion for cancer advocacy deepened when she joined the Board of Directors at Bay Area Cancer Connections, solidifying her leadership in the cancer support community. Her recent graduation from the Project Lead Institute through the National Breast Cancer Coalition further highlights her commitment to health promotion and cancer advocacy. This combination of experience and education allows Vicki to make a lasting impact, advocating for both cancer prevention and support while empowering individuals through her work and leadership.
Vicki's dedication to bridging fitness and cancer care continues to make a significant difference in the lives of countless individuals, demonstrating her as both a health expert and a passionate advocate for cancer support and prevention.
Takeaways:
Vicki McGrath transitioned from personal training to focus on wellness for breast cancer patients. She created exercise programs due to a lack of resources for athletes recovering from breast cancer. The program has helped over 215 women since its inception in 2011. Personal stories highlight the emotional and physical impact of exercise on recovery. Setting realistic goals is crucial for patients at different stages of treatment. Functional fitness focuses on flexibility, strength, and balance for daily activities.
Movement is essential for improving energy levels during treatment. Lymphedema management includes breathing techniques and gentle exercises. Post-treatment exercise is vital for maintaining lean body mass and overall health.
Chapters
00:00 Introduction and Background
03:08 The Journey into Breast Cancer Exercise Programs
06:09 Impact on Patients: Personal Stories
08:55 Setting Goals in Recovery11:57 Functional Fitness Explained
14:57 The Importance of Movement and Exercise
17:48 Navigating Post-Treatment Fitness20:58 Lymphedema: Understanding and Management
23:50 Advice for Newly Diagnosed Patients
27:07 Advice for Metastatic Patients
30:00 Rapid Fire Questions and Closing Thoughts
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @MantaCares and visit our website at MantaCares.com for more episodes and updates.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Alyssa Wachley shares her journey as a stage three breast cancer survivor and the founder of Warriors That Pray, a jewelry line that supports cancer warriors. She discusses the emotional and spiritual challenges faced during her diagnosis, the importance of community and prayer, and how her faith evolved through adversity. Alyssa emphasizes the significance of connection and support for those battling cancer, and shares inspiring stories of how her organization has made a difference in people's lives.
Warriors That Pray website: https://www.warriorsthatpray.com/
Warriors That Pray Instagram: https://www.instagram.com/warriorsthatpray/
About Our Guest:Alyssa Wakeley | Founder of Warriors That PrayAlyssa Wakeley, with a heart for serving others, founded Warriors That Pray on the belief that every person is uniquely created with a purpose to fulfill. As a wife, mother, and devoted dog-lover, she strives to make a meaningful impact in the lives of those around her, offering encouragement and hope to those facing difficult times.
In 2020, at just 27 years old, Alyssa was diagnosed with breast cancer—a life-altering moment that could have defined her. Instead, she chose to walk through the journey with unwavering faith and a positive spirit. Refusing to let cancer steal her joy, she became a source of strength and inspiration to those around her, from family and friends to her medical team. Her resilience and deep-rooted faith carried her through the toughest moments, reminding her that she was never alone.
Now cancer-free, Alyssa is living life to the fullest and using her experience to uplift others. Out of her journey, Warriors That Pray was born—a movement designed to encourage and support those navigating their own battles. Through prayer bracelets, she offers a tangible reminder that even in the valley, God is with you… and PRAYER CHANGES THINGS.
Alyssa’s mission is clear: to spread hope, faith, and love, reminding others that no matter the challenge, they are seen, valued, and never alone. Through WTP, she continues to make a lasting impact, trusting in God's plan and using her story to bring light to those in need.
Takeaways:
You're allowed to feel that way when diagnosed with cancer.
Community support was crucial during Alyssa's treatment.
Warriors That Pray was founded to give back to cancer warriors.
Jewelry serves as a tangible reminder of support and encouragement.
Prayer played a significant role in Alyssa's healing journey.
Everyone's faith journey is unique and valid.
It's important to advocate for yourself in medical settings.
Asking for help is a strength, not a weakness.
Connection is vital for those going through tough times.
Alyssa's organization aims to bless others and foster community.
Chapters
00:00 Navigating Faith and Cancer Diagnosis
03:04 The Birth of Warriors That Pray
05:55 The Role of Prayer in Healing
08:59 Personal Growth Through Adversity
11:59 Creating Community and Connection
15:03 Rapid Fire Insights and Advice
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @MantaCares and visit our website at MantaCares.com for more episodes and updates.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Tags:
faith, cancer, prayer, community, support, healing, Warriors That Pray, personal growth, adversity, connection
Valerie David, also known as The Pink Hulk, is a three-time cancer survivor (non-Hodgkin’s lymphoma, stage 2 breast cancer, and stage 4 metastatic breast cancer) who turned her journey of resilience into an award-winning one-woman show. Through humor, raw honesty, and advocacy, she inspires audiences worldwide—proving that even cancer won’t stop her from taking center stage.
Check out Valerie’s show, The Pink Hulk here: https://pinkhulkplay.com
Key Highlights:
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Valerie trusted her inner voice when symptoms appeared, even when doctors initially dismissed them. If you are able to get second opinions, advocate for yourself, and listen to your gut, you’ll find this to be useful in other parts of your own life.
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Balancing intuition with fear over symptoms can be tricky, but Valerie advises: don’t panic over nothing, don’t choose to live in fear. Instead, stay proactive by communicating with your care team about any arising symptoms.
About our guest:
Valerie David is an actor, playwright, writer and editor. Her greatest accomplishment in life is being a three-time cancer survivor. She was diagnosed and treated for Stage III Non-Hodgkin’s Lymphoma in 1999, Stage II Breast Cancer in 2014 and 2015, and Stage IV Breast Cancer in 2018.
As of April 2019, she has beaten cancer again! Valerie reactivated her superhero within, and exactly 5 months after receiving hormone treatment only in pill form–no surgery, no radiation, no chemotherapy, Valerie no longer has active disease. She has since kept up a full schedule of performances–nothing has stopped her. Valerie’s inspirational solo show, The Pink Hulk, has been accepted into almost 50 different play festivals worldwide since its 2016 debut, won multiple awards and has been touring since its very first performance, impacting audiences with the show’s universal message of hope and empowerment. She has performed in over 25 different cities and globally, including in England, Sweden, Iceland, and Finland.
A graduate of the American Academy of Dramatic Arts, her credits include the Off-Broadway production of A Stoop on Orchard Street, Cookie in Rumors and Claudia Shear’s Blown Sideways Through Life. Films: How I Became that Jewish Guy, which premiered at a November 2015 NYC Film Festival, and Bridges and Tunnels. Valerie volunteers as a motivational speaker at the Leukemia & Lymphoma Society’s Team in Training events and Make-A-Wish Foundation. As a marathon cyclist, she co-founded Cycle of Hope, which raises money for national and international cancer organizations through bike marathons. Her most recent biking event raised almost $5,000 for the American Cancer Society and the Leukemia & Lymphoma Society.
Key Moments:
At 7 minutes 28 seconds “What is my choice? Is my choice going to live in fear every single day? Is it going to be well, we'll deal with it when it happens. So I think what I've learned from cancer is don't worry until there's something to worry about.”
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Samira, a breast cancer survivor and CEO of Manta Cares, discusses the latest advancements in cancer treatment with Dr. Doug Blayney at the ASCO conference. They explore the significant impact of exercise on cancer treatment tolerance and survival, the de-escalation of chemotherapy, the introduction of new therapies like SERDs and antibody drug conjugates, and the role of circulating tumor DNA in monitoring cancer recurrence. The conversation emphasizes the importance of patient convenience and self-advocacy in cancer care.
About Our Guest:
Douglas W. Blayney, MD is a Professor of Medicine (Oncology), Emeritus, former Medical Director of Stanford Cancer Center, and specializes in the treatment of breast cancer. He has a special interest in the quality and value of cancer care. Dr. Blayney is a past president of the American Society of Clinical Oncology (ASCO), a founder of the ASCO Quality Symposium, a co-author of the ASCO value framework descriptions, and instigated the ASCO clinical "big data" effort, which is now CancerLinQ. He received the inaugural Ellen Stovall Award for Leadership in Patient Centered Care from the National Coalition for Cancer Survivorship in 2016. He was previously a Professor of Internal Medicine and Medical Director of the Comprehensive Cancer Center at the University of Michigan, and prior to that practiced and led Wilshire Oncology Medical Group, Inc. a physician owned multidisciplinary oncology practice in southern California. He has expertise on clinical trial development, use of oncology drugs in clinical practice, reimbursement and marketing strategies and information technology use.
Chapter Codes
00:00 The Impact of Exercise on Cancer Treatment
02:00 Interview at ASCO Starts
06:00 Advancements in Cancer Treatment: De-escalation and AI
11:52 Emerging Therapies: SERDs and Antibody Drug Conjugates
18:11 Circulating Tumor DNA: A New Frontier in Monitoring
24:01 Convenience in Cancer Care: A Patient-Centric Approach
Takeaways
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Regular exercise can increase tolerance to cancer treatments.
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Data shows exercise has tangible benefits on survival rates.
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De-escalation of chemotherapy is a key focus in cancer treatment.
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AI is being integrated into cancer treatment guidelines.
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Patients can take proactive steps to improve their health.
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Oral SIRDs are emerging as a more convenient treatment option.- Antibody drug conjugates target cancer cells with fewer side effects.
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Circulating tumor DNA can help detect cancer recurrence earlier.
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Convenience in treatment is becoming a priority for patients.
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Competition among treatments may help reduce costs for patients.
Tags & Keywords:
cancer treatment, ASCO, exercise, AI, SIRDs, antibody drug conjugates, circulating tumor DNA, patient care, chemotherapy, cancer survival, health technology
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.
Listen Elsewhere:
Website: https://mantacares.com/pages/podcast?srsltid=AfmBOopEP5GJ-Wd2nL-HYAInrwerIVhyJw67salKT-r9Qb_gadBvbHie YouTube: https://youtu.be/UjsAtpbedA8 Spotify: https://open.spotify.com/episode/7HwhjXHZU0ZWWVkXrCSV7V?si=d5e986f0885a4bbb Apple: https://podcasts.apple.com/us/podcast/cervical-cancer-and-hpv-what-you-need-to-know/id1622669098?i=1000710235401
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Dr. Barbara Moscicki discusses the critical role of HPV in women's health, particularly its association with various cancers, including cervical cancer. She explains the dual nature of HPV as both a commensal organism and a pathogen, emphasizing the importance of understanding its oncogenic potential. The conversation also covers the significance of screening methods, such as Pap smears, in detecting precancerous changes and the complexities surrounding the treatment of different cervical intraepithelial neoplasia (CIN) stages. This conversation delves into the complexities of cancer screening methods, particularly focusing on cervical and anal cancer. Dr. Barbara Moscicki discusses the importance of understanding various screening guidelines, the role of HPV vaccination in preventing cancers, and the need for clear communication between clinicians and patients regarding these topics. The discussion highlights the evolving nature of cancer screening practices and the importance of patient education in navigating these changes.
About Our Guest:
Dr. Moscicki is a Pediatrician, Board Certified in Adolescent Medicine. She is the current Division Chief of Adolescent and Young Adult Medicine with clinical expertise in reproductive health care for menstrual irregularities, sexual health, and sexually transmitted diseases. Dr. Moscicki has expertise in HPV -related disease including diagnosis of cervical dysplasia and treatment. She also offers medical care for women with eating disorders.
Resources & Links:
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI research study here: https://pubmed.ncbi.nlm.nih.gov/33632649/ ‘Effect of 2 Interventions on Cervical Cancer Screening Guideline Adherence’Chapter Codes
00:00 Introduction to HPV and Women's Health
03:00 Understanding HPV's Role in Cancer
06:01 The Dual Nature of HPV: Commensal vs Pathogenic
08:57 Oncogenes and Their Impact on Cellular Regulation
12:09 The Intersection of HPV and Screening Methods
14:58 Cervical Cancer Screening and Pap Smears
20:30 Understanding Cancer Screening Methods
23:17 Guidelines for Cervical and Anal Cancer Screening
31:02 The Importance of HPV Vaccination
39:35 Key Messages for Clinicians and Patients
Takeaways
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Dr. Moscicki specializes in adolescent and young adult medicine.
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HPV is linked to multiple cancers beyond cervical cancer.
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The understanding of HPV's role in cancer has evolved significantly.
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E6 and E7 proteins from HPV disrupt normal cell regulation.
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CIN3 is considered a true pre-cancer that requires treatment.
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Liquid cytology has improved the accuracy of Pap smears.
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CIN1 is often self-resolving and does not require treatment.
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CIN2 presents a diagnostic dilemma due to variability in interpretation.
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Women have options regarding the management of CIN2 lesions.
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.
Listen Elsewhere:
Website: https://mantacares.com/pages/podcast?srsltid=AfmBOopEP5GJ-Wd2nL-HYAInrw YouTube: https://www.youtube.com/@mantacares Spotify: https://open.spotify.com/episode/3TR1lFLtf6em5YyKtlWy2L?si=6ma-9g_w Apple: https://podcasts.apple.com/us/podcast/navigating-cervical-cancer-screening-surger
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
In this episode of The Patient From Hell, host Samira Daswani speaks with oncology pharmacist Megan Hartranft about the critical role of oncology pharmacists in cancer care. They discuss the unique responsibilities of oncology pharmacists, the importance of patient education, and the growing field of oral chemotherapy. Megan shares insights on medication adherence, the use of mobile health technologies, and the significance of symptom management in improving patient outcomes. The conversation highlights the need for better integration within healthcare systems and offers practical tips for patients navigating their treatment journey.About Our Guest:Dr. Megan Hartranft is a Clinical Lead with the Clinical and Digital Solutions team, advising on precision oncology products.Prior to joining Labcorp, Dr. Hartranft was a Field Medical Scientific Associate Director at Sanofi, in charge of training for the hematology-oncology medical science liaison team. Earlier as a practicing clinician, she established an oral chemotherapy education program and participated in interprofessional clinics at Rush University Cancer Center. She has also spent time in academia as the oncology faculty member at Rosalind Franklin University of Medicine and Health Sciences, where she maintains an adjunct appointment. Dr. Hartranft is active in several professional organizations, including her roles on the Hematology Oncology Pharmacy Association's Public Policy & Advocacy Committee as well as the American Society of Health System Pharmacy Section of Pharmacy Informatics and Technology Clinical Decision Support and Analytics Advisory Group.
- BS in Biochemistry/Molecular Biology and BA in Classical Studies - Michigan State University
- Doctor of Pharmacy - University of North Carolina at Chapel Hill
- PGY1 Pharmacy Residency - University of Michigan
- PGY2 Oncology Specialty Residency - University of Georgia/Augusta University Health System
Resources & Links:This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI research study here: https://pubmed.ncbi.nlm.nih.gov/30964... ‘Integrating Advance Care Planning Videos into Surgical Oncologic Care: A Randomized Clinical Trial’00:00 Introduction to Oncology Pharmacy02:49 The Role of Oncology Pharmacists in Patient Care06:03 Patient Interaction and Education09:09 Exploring Oral Chemotherapy11:45 Adherence to Oral Anti-Cancer Medications15:01 Mobile Health Technologies in Oncology17:58 Symptom Management and Patient Support21:11 The Future of Oncology Pharmacy24:09 Final Thoughts and Tips for PatientsConnect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.Listen Elsewhere: Website: https://mantacares.com/pages/podcast?... YouTube: https://www.youtube.com/@mantacares Spotify: https://open.spotify.com/episode/3TR1... Apple: https://podcasts.apple.com/us/podcast... Disclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
Dr. Anita Srinivasan, a surgical oncologist, discusses her journey in oncology, the challenges faced in safety net hospitals, and the importance of patient-centered care in surgical oncology. The discussion covers the pain comparison between mammograms and cosmetic treatments, the impact of fear on surgical choices, and the significance of advanced care planning and patient education in making informed decisions about breast cancer treatment.
About Our Guest:
Surgeon, Health Executive, Healthcare Operational Excellence and Profitability Leader | 20+ years as a surgeon, health executive, thought leader, innovator, and advocate for health equity and access
Resources & Links:
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI research study here: https://pubmed.ncbi.nlm.nih.gov/30964385/ ‘Integrating Advance Care Planning Videos into Surgical Oncologic Care: A Randomized Clinical Trial’
Chapter Codes
00:00 The Pain of Mammograms vs. Cosmetic Treatments
02:55 Dr. Anita Srinivasan's Journey in Oncology
05:51 Understanding Safety Net Hospitals
09:08 Challenges in Treating Advanced Breast Cancer
12:02 Surgical Oncology: Approaches and Techniques
15:08 The Importance of Patient-Centered Care
17:56 Advanced Care Planning in Surgical Oncology
21:07 The Role of Patient Education in Decision Making
24:01 The Impact of Fear on Surgical Choices
26:53 Future Directions in Surgical Oncology
Connect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.
Listen Elsewhere:
Website: https://mantacares.com/pages/podcast?srsltid=AfmBOopEP5GJ-Wd2nL-HYAInrwerIVhyJw67salKT-r9Qb_gadBvbHie
YouTube: https://youtu.be/2SxvTqJht34?si=2U_98RfJJeWkTaT3
Spotify: https://open.spotify.com/episode/3TR1lFLtf6em5YyKtlWy2L?si=6ma-9g_wTIWTCLmHiHF_Aw
Apple: https://podcasts.apple.com/us/podcast/navigating-cervical-cancer-screening-surgery-and/id1622669098?i=1000706666920
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
Tags & Keywords:
oncology, breast cancer, surgical oncology, patient care, mammograms, safety net hospitals, advanced care planning, patient education, mastectomy, lumpectomy
Dr. Shannon McLaughlin-David discusses the complexities of cervical cancer, HPV, and the role of gynecologic oncology. The dialogue explores the emotional and clinical challenges faced by both patients and clinicians, emphasizing the importance of effective communication and empathy in patient care. The discussion also highlights the various types of gynecologic cancers, surgical interventions, and the difficult decisions patients must make regarding their treatment options. This conversation delves into the complexities of patient autonomy, the emotional challenges faced by oncologists, and the systemic incentives within healthcare that can impact patient care. The discussion also covers the evolution of cervical cancer screening guidelines, the role of HPV in cervical cancer, and the importance of patient advocacy and education regarding vaccination.
About Our Guest:
Shannon MacLaughlan David, MD, MS is a board-certified gynecologic oncologist and Founder of SMacDavidMD, LLC, a Coaching and Consulting firm. Following her residency in Ob/Gyn, Dr. MacLaughlan David went on to complete fellowship training in Gynecologic and Breast Oncology at Alpert Medical School of Brown University and spent her career in academic medicine at Stanford University's School of Medicine and the University of Illinois - Chicago. She also holds a master's degree in integrative medicine, which she used to build innovative clinical practice models for gynecologic cancer survivors as Director of the Gynecologic Oncology Integrative Practice Unit at the University of Illinois Cancer Center. Shannon, or "SMac," is a fierce advocate for women's health, cancer prevention and survivorship, and health equity.
Resources & Links:
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI research study here: https://www.google.com/url?q=https://pubmed.ncbi.nlm.nih.gov/33632649/&sa=D&source=editors&ust=1746483503903350&usg=AOvVaw0SNo_jk-rzoVp85P5E3s6F ‘Effect of 2 Interventions on Cervical Cancer Screening Guideline Adherence’
Chapter Codes
00:00 Introduction to Cervical Cancer and HPV
02:49 The Journey to Gynecologic Oncology
05:57 Understanding Gynecologic Cancers
09:05 Surgical Interventions in Gynecologic Oncology
11:59 The Complexity of Patient Decisions
15:07 Patient-Clinician Communication Challenges
17:45 The Role of Empathy in Oncology
21:05 Navigating Hormonal Treatments and Patient Reactions
27:30 Navigating Patient Autonomy and Medical Ethics
29:47 The Emotional Toll of Oncology
33:00 Understanding the Healthcare System's Incentives
35:58 The Role of Patient Advocacy
39:05 The Evolution of Cervical Cancer Screening Guidelines
51:46 HPV and Its Impact on Cervical Cancer
54:48 Current Screening Protocols and HPV Vaccination
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
In this episode of The Patient From Hell, host Samira Daswani speaks with Dr. Sara Char about her journey into oncology, the evolution of cancer biology, and the significant role of the microbiome in colon cancer. They discuss the complexities of cancer survivorship, the effectiveness of different methods of delivering survivorship care plans, and the importance of colonoscopy in monitoring colorectal cancer. The conversation also delves into the impact of diet on cancer risk, emphasizing the need for a comprehensive understanding of dietary patterns rather than focusing solely on individual foods. In this conversation, Dr. Sara Char discusses various aspects of survivorship care for colorectal cancer patients, focusing on dietary recommendations, exercise, and the emotional challenges faced during the transition from active treatment to survivorship. The dialogue emphasizes the importance of balancing nutrition, understanding the role of GLP-1 agonists, and the need for a supportive care team. Additionally, the conversation highlights the unique mental health needs of survivors and the significance of providing patients with a roadmap for their cancer journey.
About Our Guest:
Dr. Sara Char is a hematology and oncology fellow at Dana-Farber Cancer Institute. She specializes in the care of patients with gastrointestinal cancers with a specific interest in young-onset colorectal cancer. Her research explores the molecular underpinnings of diet and lifestyle factors implicated in colorectal cancer development and progression. Dr. Char received her M.D. from Tufts University School of Medicine and completed her residency training in internal medicine at Massachusetts General Hospital, where she also served as chief resident. Outside of work, she is a self-identified foodie and devoted dog-mom.
Resources & Links:
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI research study here: https://pubmed.ncbi.nlm.nih.gov/34302474/ - ‘Simplifying Survivorship Care Planning: A Randomized Controlled Trial Comparing 3 Care Plan Delivery Approaches’
Chapter Codes
00:00 Exploring the Microbiome and Colon Cancer
05:59 The Transition to Survivorship Care
11:57 Understanding Adherence in Survivorship Plans
17:49 The Role of Colonoscopy in Survivorship
24:06 Dietary Patterns and Cancer Risk
25:04 Inflammatory Diet and Health Outcomes
28:11 Dietary Recommendations for Cancer Survivors
30:34 Exercise and Body Composition in Cancer Care
31:59 Managing GI Issues with GLP-1 Agonists
34:43 Navigating Multidisciplinary Care
35:50 The Transition from Active Treatment to Survivorship
38:08 Mental Health Challenges Post-Treatment
41:41 The Need for Psycho-Oncology Support
46:47 The Importance of Patient Education and Resources
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
In this episode, Dr. Tejas Jayakrishnan discusses the rising incidence of young onset colorectal cancer (CRC) and the potential environmental factors contributing to this trend. The conversation delves into the importance of screening protocols, the challenges faced in early detection, and the role of education in increasing awareness and understanding of cancer risks. Dr. Jayakrishnan emphasizes the need for tailored approaches in patient care, particularly for younger patients, and highlights ongoing research efforts aimed at improving outcomes in this demographic.
About Our Guest:
Dr. Thejus Jayakrishnan is a gastrointestinal medical oncologist at Dana-Farber Cancer Institute and Brigham and Women’s Hospital, and an Instructor in Medicine at Harvard Medical School. Originally from India, he completed his medical training in New Delhi and continued his journey through residency in Pittsburgh and oncology fellowship at Cleveland Clinic.
Dr. Jayakrishnan's research explores why some people develop cancers like colorectal cancers at a younger age. He studies how metabolism, gut bacteria, and genetics contribute to these patterns, with the goal of developing better tools for screening and treatment.
In the clinic, he treats patients with all types of gastrointestinal cancers and works closely with Dana-Farber’s Young-Onset Colorectal Cancer Center. His focus is on translating scientific discoveries into meaningful improvements in care through clinical trials. Outside of work, he’s an avid cyclist, outdoor enthusiast, and lover of books and movies.
Resources & Links:
- This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI research study here: https://pubmed.ncbi.nlm.nih.gov/30578103/ - ‘Impact of including quantitative information in a decision aid for colorectal cancer screening: A randomized controlled trial’ Chapter Codes:
00:00 - Understanding Young Onset Colorectal Cancer
10:03 - Screening Protocols and Challenges
19:50 - The Role of Education in Cancer Awareness
30:04 - Future Directions in Colorectal Cancer Research
Connect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @MantaCares and visit our website at MantaCares.com for more episodes and updates.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
Join us as we welcome Dr. Fauzia Riaz, Samira’s oncologist, who believes in treating the whole person—not just the cancer.
In this episode, we explore survivorship care: What does it truly mean? What insights does a thousand-person study reveal about different cancer survivorship care models? How can oncologists optimize treatment plans to improve quality of life for survivors? And what gaps must care providers address to ensure lasting, meaningful impact? This episode features the following PCORI study: Quality of life among cancer survivors by model of cancer survivorship care by Holly Mead.
Your Cancer GPS is here! Step-by-step breast cancer maps based on what others have gone through and what oncologists recommend: https://mantacares.com/pages/new-see-how-it-works
Sound Bites
- "You're helping me live and thank you for saving my life."
- "It's important to look at the emotional and psychological impact."
- "Survivorship is recognizing that cancer care extends beyond treatment."
- "Quality of life is influenced by emotional and psychological factors."
- "Survivorship care should be integrated from the beginning."
- "We need to think about how we're delivering cancer care."
- "Treatment optimization is going to be so important."
Chapters
00:00 The Journey of Cancer Care
09:59 Understanding Survivorship
19:50 The Impact of Treatment Models
30:08 Research and Future Directions in Oncology
Key Highlights:
-
Being attentive as a physician involves more than just careful monitoring during each step of treatment; it also requires providing support and compassion to the whole person you’re treating.
-
The goal of survivorship is more than just surviving; it is to thrive and lead a high-quality life moving forward. There are two main survivorship care models from the study we reviewed, post-survivorship treatment and oncology-embedded survivorship. Each survivorship care model has their role.
👤 Guest Bio:
Dr. Riaz is dedicated to advancing breast cancer treatment through an innovative clinical trial program that focuses on cutting-edge therapeutics and biomarkers. Dr. Riaz is studying circulating tumor (ct) DNA-minimal residual disease (MRD) as a pivotal biomarker for early-stage breast cancer. She aims to enhance its use in surveillance and early detection while guiding personalized treatment strategies through novel clinical trials. Furthermore, she is committed to improving immunotherapy efficacy by modifying the tumor microenvironment. Her research involves developing early-phase trials that integrate novel therapeutic approaches, combining immunotherapy and radiotherapy.
As a Clinical Assistant Professor at Stanford University School of Medicine, Dr. Riaz is also committed to improving the accessibility of cutting edge therapies to all patients. She is leading a collaborative effort with multiple institutions to develop databases that track patient outcomes and inform treatment practices.
Dr. Riaz’s overarching goal is to expand early-phase clinical trials and foster academic-industry partnerships to advance the field of breast oncology and improve patient care.
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Manta Cares, cancer survivorship, survivorship care, cancer treatment, oncology care models, cancer survivor care, cancer treatment optimization, effective cancer care, personalized cancer treatment
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI)
In this episode of The Patient From Hell, host Samira Daswani speaks with oncology nurse Joshua Carter about his path into cancer care, shaped by personal experiences with family illness. They explore the differences between palliative and hospice care, the complexities of pain management, and the vital role nurses play as advocates. Josh also discusses misconceptions around pain medication, the promise and challenges of e-health tools, and the often-invisible workflows nurses navigate daily. He shares practical advice for patients, caregivers, and fellow clinicians, emphasizing the importance of early palliative care and being a bold advocate within the healthcare system.
About Our Guest
Josh Carter is an Oncology Nurse at Stanford Women's Cancer Center. His entire 17-year nursing career has been in oncology, with inpatient, industry, and outpatient experiences in Cleveland, Chicago, San Diego, and San Francisco. Josh holds undergraduate degrees from Kent State University and Ohio University and is currently on track to complete his Master's at the University of Michigan School of Nursing this Fall. He is a certified Oncology and Breast Care Nurse. His interests include Nursing Innovation, Digital Health, Patient Advocacy, Patient Education, Patient-Centered Design, Healthcare Improvement, Quality, and Implementation Science. With his interests in Healthcare Quality, Josh is currently a Site Assessor for the Michigan Oncology Quality Consortium.
Josh has spoken at the National Oncology Nursing Society Congress and Authored Chapters of Oncology Nursing Society Text Books. Josh has been involved with research for caregivers of Cancer patients and has helped in the launch of newly approved cancer treatments. Josh has experience working on a cancer care delivery team at ASCO and has been awarded the DAISY Award for Extraordinary Nurses.
Resources & Links:
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI study “A Stepped-Wedge Randomized Controlled Trial: Effects of eHealth Interventions for Pain Control Among Adults With Cancer in Hospice”
Sections
00:00 - Journey into Oncology Nursing
03:22 - Understanding Palliative vs. Hospice Care
07:04 - Pain Management in Cancer Care
10:23 - Pain Management Strategies and Misconceptions
20:32 - E-Health Interventions in Pain Management
23:19 - The Complex Workflow of Oncology Nursing
27:48 - Quick Tips for Patients and Caregivers
Connect with Us:
Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on instagram, facebook, or linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.
Listen Across Platform:
Website: https://mantacares.com/pages/podcast?srsltid=AfmBOopEP5GJ-Wd2nL-HYAInrwerIVhyJw67salKT-r9Qb_gadBvbHie
YouTube: https://www.youtube.com/@mantacares
Spotify: https://open.spotify.com/show/6gM1GxDBUgXrHwlO0Zvnzs?si=9edb8680461d4eaa
Apple: https://podcasts.apple.com/us/podcast/patient-from-hell/id1622669098
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
Episode Summary:
In this episode of The Patient from Hell, we sit down with Samira and Dr. Samantha, two storytellers who delve into the power of personal narratives, cultural identity, and representation. They share their experiences navigating different spaces, finding their voices, and embracing authenticity. Whether you’re interested in storytelling, personal growth, or the intersections of culture and identity, this episode offers deep insights and inspiration.
About Our Guest:
Dr. Samantha Siegel is an onco-pcp and survivorship physician at Kaiser Permanente. She has survived relapsed/refractory Hodgkin Lymphoma, including an autologous bone marrow transplant in June 2022. This has made her passionate about integrative oncology, AYA survivorship, longterm toxicities, returning to work after cancer and more. Dr. Siegel is the cofounder of PCP-ONC CARES program, a longitudinal cancer survivorship care model beginning at diagnosis and she serves as the current director of Cancer Survivorship for Kaiser San Francisco. She is the host of AIM at Melanoma’s supportive cancer care podcast, “Beyond the Clinic.” Dr. Siegel is focused on elevating cancer survivorship to a distinct board certification status. She lives in Davis with her husband, three kids and energetic dog. They enjoy outdoor activities and plant-based living.
Key Highlights:
- [00:10:30] The Power of Storytelling in Identity: Sam and Samira discuss how personal experiences shape the stories we tell and the impact storytelling has on self-identity and cultural understanding.
- [00:22:45] Challenges in Representation: They share their experiences with representation in the media and the barriers they’ve faced in telling authentic stories.
- [00:35:00] Embracing Authenticity in Creative Work: A conversation about the importance of staying true to oneself and how authenticity can lead to more meaningful storytelling and connection.
Key Moments:
- [00:02:15] - Introduction to Sam and Samira
- [00:10:30] - How personal experiences shape storytelling
- [00:22:45] - Overcoming challenges in representation
- [00:35:00] - The impact of authenticity in creative work
- [00:48:20] - Closing thoughts and takeaways
Connect with Us: Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.
Resources & Links:
- This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI study “Effects of a Communication Intervention Randomized Controlled Trial to Enable Goals-of-Care Discussions” by Nina Bickell
Disclaimer:
All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
In this episode of The Patient From Hell, host Samira Daswani sits down with Dr. Cara Bohon, a clinical psychologist and researcher, to explore the unique mental health challenges faced by cancer patients and survivors. They discuss the role of cognitive behavioral therapy (CBT) in cancer care, the complexities of treating cancer-related insomnia, and the shortage of mental health professionals trained in oncology.
Dr. Bohon and Samira also review a PCORI-funded study led by Dr. Jun J. Mao, comparing the effectiveness of CBT-I (cognitive behavioral therapy for insomnia) versus acupuncture for cancer-related insomnia. Dr. Bohon breaks down step-by-step sleep strategies for cancer patients, offering practical tools to improve sleep, emotional well-being, and cancer-related anxiety—even for those without access to therapy.
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Jun J Mao, MD.
Check out the free mental health resources mentioned in this episode from Veterans of America here.
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Your Cancer GPS is here! Step-by-step breast cancer maps based on what others have gone through and what oncologists recommend.
Key Highlights:
- Insomnia is a major issue for cancer patients and survivors alike – beyond just trouble sleeping, it exacerbates pain, fatigue, cognitive impairment, and emotional distress, making cancer treatment even more challenging.
- The clinical trial covered in this episode found that cognitive behavioral therapy for insomnia (CBT-I) led to better sleep improvements compared to acupuncture, with lasting effects even after treatment ended. While acupuncture may not be as effective as CBT-I for sleep, it showed short-term benefits for managing cancer-related pain, which can still be valuable for your mental health as well
- The problem with therapy today is not just accessibility, but also the fact that many therapists aren't trained in psycho-oncology, making it difficult for cancer patients to find mental health support tailored to their unique challenges.
- Techniques from CBT-I, such as sleep restriction, stimulus control, cognitive restructuring, and relaxation exercises, can significantly improve sleep quality—even for those who can't afford professional therapy.
About our guest:
Dr. Cara Bohon is a clinical psychologist and researcher from Stanford University with experience scaling delivery of evidence-based mental health treatments to meet the huge needs of patients across the United States. She led clinical programs and research at Equip Health, which addressed the demand for effective eating disorder treatment by providing training and virtual delivery of evidence-based eating disorder treatment across the country and is passionate about expanding her work in oncology in the future.
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
Nine years with no evidence of disease—yet Megan-Claire Chase’s cancer journey isn’t over. As she once fought cancer alongside her mother, she now faces something even harder: losing her. In this episode, Megan-Claire shares a deeply vulnerable side—a daughter losing her mother. Facing your own mortality is one thing, but facing the mortality of your loved ones—friends, family, fellow cancer patients, and survivors—and the hole they leave behind is something entirely different.
Key Highlights:
- Witnessing her mother’s cancer progression brings anticipatory grief, yet despite that grief, Megan strives to learn as much about her mother as possible, including fond memories from her childhood.
- Despite the anticipatory grief, Megan and her mother engage in a bonding exercise using question cards, and she records their conversations. One of the most meaningful things she learned was that her mother reflects on her life with joy—ultimately, the greatest goal is to leave this world happy.
- Facing your own mortality can unearth many emotions: the need to be confident and not tolerate disrespect, the desire to live life on your own terms and to the fullest, yet also a deep sense of loneliness and isolation.
About our guest:
Check out thefirst episode Megan-Claire Chase appeared in here.
Megan-Claire Chase, also known as Warrior Megsie, is the Breast Cancer Program Director and host of theOur BC Life podcast at SHARE Cancer Support. As an invasive lobular carcinoma (ILC) breast cancer survivor and passionate patient advocate based in Atlanta, GA, Megan-Claire is a dedicated champion for the needs of breast cancer patients, particularly in addressing the disparities faced by minoritized communities and those in the adolescent and young adult (AYA) communities.
In addition to her pivotal role at SHARE, she serves on Bayer Oncology's Digital Patient Council, is a patient advocate for the Oncology Data Advisor Editorial Board, and recently joined the Worth the Wait Charity advisory board. She also contributes as a writer and advisory board member for Patient Power, amplifying the voices of breast cancer patients.
Megan-Claire’s advocacy efforts include participating as a panelist onLeveraging Technology to Support Patient-Centered Multidisciplinary Oncologic Care at the 2024 ASCO Quality Care Symposium, co-authoring a podcast and infographic on genetic testing in metastatic breast cancer, collaborating with Pfizer on theAction Guide to Disrupt Inequitable Health Outcomes, and sharing her personal journey on PBS’sBeyond Cancer throughStories from the Stage. Her work has been spotlighted in notable publications likeThe New York Times,People Magazine,Cancer Health,Cancer Today, andCURE Magazine.
Beyond her cancer advocacy, Megan-Claire is a versatile voiceover actor, a dedicated social justice activist, and a proud cat mom to Phoebe.
Disclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Looking for tools to help you take control of your cancer experience? Check out My Cancer GPS™, a step-by-step map that guides you through the entire cancer experience.
In this enlightening episode of the Patient From Hell, host Samira Daswani interviews Dr. Sara Tolaney, a leading oncologist specializing in breast cancer. They delve into the evolving landscape of triple-negative breast cancer (TNBC), exploring advancements in treatment, from targeted therapies to immunotherapy, and the challenges faced by patients in both early-stage and metastatic settings. With her characteristic warmth and expertise, Dr. Tolaney provides actionable insights for patients and caregivers, offering hope and understanding in navigating this complex diagnosis.Key Highlights:1. A New Paradigm in Early-Stage TNBC Treatment: Dr. Tolaney explains how neoadjuvant chemotherapy combined with immunotherapy has revolutionized outcomes, achieving pathologic complete response rates above 60%.2. Metastatic TNBC Advances: The discussion highlights the critical role of biomarker testing and the introduction of innovative therapies like antibody-drug conjugates, providing extended survival for many patients.3. Empowering Patient Symptom Management: The episode underscores the importance of patient-reported outcomes and emerging tools like health apps to enhance self-management and real-time support for side effects.About our guest:Sara Tolaney, MD, MPH is the Chief of the Division of Breast Oncology at Dana-Farber Cancer Institute, and is internationally recognized for her research and education leadership in breast cancer. She also serves as Associate Director of the Susan F. Smith Center for Women’s Cancers and is a Senior Physician at Dana-Farber Cancer Institute and Associate Professor of Medicine at Harvard Medical School. Dr. Tolaney received her undergraduate degree from Princeton University and her medical degree from UC San Francisco. She subsequently completed her residency in Internal Medicine at Johns Hopkins University, and fellowships in hematology and medical oncology at Dana-Farber Cancer Institute. She obtained her Masters in Public Health from Harvard School of Public Health. Her research focuses on the development of novel therapies in the treatment of breast cancer and developing more effective and less toxic treatment approaches. Her work has demonstrated that a relatively low risk regimen is beneficial in women with early stage node-negative HER2-positive cancers, and this works has been incorporated into national and international guidelines. She has developed several follow-up studies looking at novel approaches to early stage HER2-positive disease and has also played a significant role in development of cdk 4/6 inhibitors, antibody drug conjugates, and immunotherapy in breast cancer. She is the author of over 150 peer-reviewed publications with manuscripts included in many prestigious journals such as the New England Journal, Lancet Oncology, Journal of Clinical Oncology, and JAMA Oncology.Key Moments:At 8 minutes: "It used to be that if someone had a triple negative breast cancer, we would often take someone to surgery and then after surgery give them some chemotherapy to kill any stray cells that might've gotten into the bloodstream and integrate radiation as needed. But we've really changed our approach very dramatically over the last few years where we've learned that if someone has an early stage, stage two or three triple negative breast cancer, it is actually very critical that they not go to upfront surgery, but in fact get chemotherapy with immunotherapy prior to surgery."Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
This episode is sponsored by Gilead Oncology. Gilead had no involvement or input in the podcast content. Gilead Oncology is working to transform how cancer is treated. We are innovating with next-generation therapies, combinations, and technologies to deliver improved outcomes for people with cancer. From antibody drug conjugates and small molecules to cell therapy-based approaches, our portfolio and pipeline assets are creating new possibilities for people with cancer.
Maimah Karmo shares her story with triple-negative breast cancer and how she founded the Tiger Lily Foundation. Maimah emphasizes the importance of self-advocacy, community support, and education in traversing healthcare challenges. She shares her experience of being dismissed by doctors due to her age and ethnicity, and how this motivated her to create an organization that empowers women of color facing similar struggles.
Key Highlights:
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Trust your gut, it could save your life.
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Don’t do it alone, community is what will help you do what you need to do even if you’re afraid.
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Be the best advocate you can be for yourself, this is your life and your body – you are worth the fight.
About our guest:
Maimah Karmo is the Founder/CEO of the Tigerlily Foundation (Tigerlily) and an eighteen-year survivor of breast cancer. On February 28, 2006, at 4:45 p.m., Maimah was diagnosed with Stage 2 triple negative breast cancer. She had no family history and was 32-years old. While undergoing her second round of chemotherapy, she made a promise to God that if she survived, she would create an organization to educate, empower, advocate for and support young women affected by breast cancer. A first-generation immigrant from Liberia, who has experienced disparities first-hand, she is a leader in the women’s health field, creating and implementing national health initiatives for women and girls, with a goal of eliminating disparities of age, stage and color. Under Maimah’ s leadership, Tigerlily Foundation has launched national and global health initiatives focused on ending disparities, through the #InclusionPledge, partnering with global stakeholders, with a call to action to recognize health disparities as a social justice issue; and working to end disparities for black women in our lifetime. She is a global thought leader, health advocate and philanthropist, committed to justice and equity for all. Maimah also works directly with women and their families to connect the patient with better care and knowledge. through events such as the Annual Young Women’s Breast Health Day on the Hill and other philanthropic efforts and successful educational and support programs.
You can find Maimah on Twitter, on Instagram, and on Facebook.
Check out the Tigerlily Foundation here.
Key Moments:
At 6 minutes 25 seconds “I ended up finding the flower one day, the tiger lily… It's like a woman, beautiful, different layers to her, and also when people are going through treatment there's a sense of so much fear. You do lose things in a way. You may lose your petals: your hair, eyebrows, eyelashes, breasts, other parts of your body, male or female. The flower is a perennial, so in the fall, winter, the petals fall off but in the spring and summer, they blossom again. I want people who are coming to Tigerlily to feel that sense of: I'm going through this time of dormancy and things are falling off, but that means I could grow and transform into something beautiful and amazing and just badass.You could find beauty, strength and be transformed throughout the cancer journey.”
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
This episode is sponsored by Gilead Oncology. Gilead had no involvement or input in the podcast content. Gilead Oncology is working to transform how cancer is treated. We are innovating with next-generation therapies, combinations, and technologies to deliver improved outcomes for people with cancer. From antibody drug conjugates and small molecules to cell therapy-based approaches, our portfolio and pipeline assets are creating new possibilities for people with cancer.
In this enlightening episode of The Patient From Hell podcast, Dr. Doug Blayney and host Samira Daswani dive deep into the key insights from the 2024 San Antonio Breast Cancer Symposium (SABCS). They explore four critical areas of breast cancer care: CDK4/6 inhibitors, antibody-drug conjugates (ADCs), de-escalation strategies for ductal carcinoma in situ (DCIS), and the emerging role of artificial intelligence in cancer diagnostics. Throughout the conversation, a central theme emerges: the increasing ability to personalize cancer treatment, considering individual patient characteristics, biological markers, treatment options, and personal goals for quality and quantity of life.
Key Highlights:
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Biomarkers are becoming increasingly sophisticated, allowing for more precise and personalized treatment approaches across different breast cancer subtypes.
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Patient choice and individual considerations are paramount, with treatment decisions now focusing on balancing potential survival benefits against quality of life impacts.
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Emerging technologies like antibody-drug conjugates and artificial intelligence are revolutionizing breast cancer care by offering more nuanced, targeted diagnostic and treatment options.
About our guest:
Dr. Doug Blayney is an oncology physician who specializes in breast cancer and the Chief Medical Officer of Manta Cares. His research focuses on quality improvement in cancer care systems, new drug development, and patient experience improvement. At the American Society of Clinical Oncology (ASCO), he was founding Editor-in-Chief of its flagship practice journal, and as President, started the ASCO Quality Symposium and began planning for ASCO’s CancerLinq. He was a founding member of the National Comprehensive Cancer Network (NCCN) Growth Factor Guideline panel, and is a past member of the U.S. Food and Drug Administration’s Oncology Drugs Advisory Committee and the NCCN Board of Directors.
Key Moments:
At 38 minutes: "There's a company now that has a gene expression panel that may predict, and it looks like it does predict, whether radiation treatment after standard treatment for DCIS is beneficial. So if this predicted biomarker of benefit for radiation pans out, and I think it probably will, that means that we can deescalate or personalize whether radiation treatment and its side effects are likely to be beneficial to that patient."
At 45 minutes: "Quality of life, can that be answered by a nine question questionnaire? Well, maybe. If you can't get out of bed, your quality of life is because something hurts or if your arm doesn't work because they're so swollen, that's one extreme... What about 15 years playing that duet? What about three? It's those kind of subtleties that we need to take into account."
At 49 minutes:"AI can interpret mammograms. The images from a mammogram 20 years ago, there were four, top, bottom, side, side, and maybe another oblique. And now there's 60 images from a mammogram. So that means that a radiologist, a human radiologist, whether it's next door or around the world, somebody needs to look at those. AI can help."
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
This episode is sponsored by Gilead Oncology. Gilead had no involvement or input in the podcast content. Gilead Oncology is working to transform how cancer is treated. We are innovating with next-generation therapies, combinations, and technologies to deliver improved outcomes for people with cancer. From antibody drug conjugates and small molecules to cell therapy-based approaches, our portfolio and pipeline assets are creating new possibilities for people with cancer.
In this heartfelt episode of The Patient From Hell, host Samira Daswani talks to Jill Massey, a pharmacist and pharma industry veteran whose path through cancer has been both personal and professional. Jill shares her experiences as a caregiver for her sister, mother, and husband—all cancer patients—before becoming a patient herself. They discuss the emotional and practical challenges of navigating caregiving, the complexities of the healthcare system, and how Jill's unique perspective as both a medical professional and a patient shaped her approach to advocacy, treatment decisions, and resilience.
Key Highlights:
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A Personal and Professional Journey: Jill reflects on how her family's battles with cancer shaped her career in the pharmaceutical industry, blending personal empathy with professional expertise.
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Balancing Roles and Emotions: From sibling to spouse to patient, Jill shares the unique emotional dynamics of each role and the coping mechanisms she developed.
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Empowerment Through Knowledge: Jill emphasizes the importance of patient education, advocating for personalized care, and the evolving role of pharmaceutical companies in supporting patient-centric care.
About our guest:
Jill Massey, PharmD, MBA, BCMAS is Vice President, Global Medical Strategy and Operations (GMSO) for Gilead Medical Affairs. In this role, Jill oversees the Patient-focused Implementation Science team, Medical Strategy and Planning, Insights, Data & Analytics and Digital Innovation, Medical Excellence, Medical Affairs Technology, and Scientific Communications including global publications, medical information, medical external affairs and education, and library and information services.
Jill joined Gilead Sciences from Immunomedics where she led the Medical Affairs, Safety and Pharmacovigilance organizations. Prior to that, she led Medical Affairs at Janssen, The Medicines Company and Melinta Therapeutics as well as the Melinta Global Antimicrobial Resistance Program. She began her career in the pharmaceutical industry at Bristol-Myers Squibb Company. Previous to her industry roles, Jill was clinical faculty at the Saint Louis College of Pharmacy, Jewish Hospital and the Program on Aging at Washington University School of Medicine.
Jill is a member of the Board of Directors for the Morris County Chamber of Commerce and serves on the Life Sciences Council Steering Committee. She is a member of the National Advisory Committee for the Robert A. Winn Diversity in Clinical Trials Award Program, a member of the Accreditation Council of Medical Affairs Executive Leadership Board and a member of the Seton Hall University Transformative Leadership Advisory Board.
Jill earned her Doctor of Pharmacy degree from the University of Nebraska Medical Center and her MBA from Drexel University LeBow College of Business. She completed a residency at Mercer University School of Pharmacy and Emory University. She is Board Certified by ACMA.
Jill loves running, baking and spending time with her two kids, Maddie and Alex, and her loved ones, sometimes including her two dogs and cat.
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
This episode is sponsored by Gilead Oncology. Gilead had no involvement or input in the podcast content. Gilead Oncology is working to transform how cancer is treated. We are innovating with next-generation therapies, combinations, and technologies to deliver improved outcomes for people with cancer. From antibody drug conjugates and small molecules to cell therapy-based approaches, our portfolio and pipeline assets are creating new possibilities for people with cancer.
In this episode of the Patient from Hell podcast, we speak with Dr. Milana Dolezal, an oncologist from Stanford University, and learn about cutting-edge advancements in cancer treatments, particularly antibody-drug conjugates (ADCs) and precision medicine. Dr. Dolezal shares her journey from childhood inspiration to a career in oncology, the evolution of cancer therapies, and how recent innovations are transforming metastatic cancer care. The conversation also delves into the intricacies of cancer biology, the impact of emerging treatments on quality of life, and the hope for a future where therapies are tailored not only to the disease but also to managing side effects effectively.
Key Highlights:
- Oncology Advancements: Dr. Dolezal explains the development of antibody-drug conjugates (ADCs) that deliver chemotherapy directly to cancer cells, reducing side effects compared to traditional treatments.
2.Cancer’s Complexity: Using vivid analogies, Dr. Dolezal illustrates how cancer evolves to resist treatments, comparing it to navigating New York’s subway system.
- Managing Side Effects: Dr. Dolezal emphasizes a "go low and go slow" approach in administering treatments to minimize side effects, tailoring doses to individual patients' needs to balance efficacy with maintaining quality of life.
About our guest:
Dr. Dolezal is a board-certified hematologist-oncologist with Stanford Medicine Cancer Center in Emeryville and a clinical associate professor in the Stanford School of Medicine, Division of Oncology. She strives to work with patients to develop care plans that are comprehensive and personalized to achieve the best possible outcomes and quality of life.
She also has extensive experience in research and drug development. She previously held positions as a clinical scientist, assistant medical director, and associate medical director in the BioOncology Therapeutics unit of the biotechnology company Genentech. She has conducted clinical research into fertility preservation in patients with breast cancer, advanced treatments for triple-negative breast cancer, and patients’ adherence to anti-cancer therapy. She has co-authored articles on her research findings that appeared in the Journal of Clinical Oncology, Cancer, and other peer-reviewed publications. She also co-authored the chapter “Progression from Hormone-Dependent to Hormone-Independent Breast Cancer” in the textbook Hormones, Genes and Cancer published by Oxford University Press.
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Chris Schuler opens up about his experience as a caregiver, navigating the challenges of neurodegeneration, particularly his father’s glioblastoma diagnosis. He shares the emotional turmoil, confusion, along with the overwhelming process of navigating the healthcare system. The conversation underscores the importance of raising awareness and understanding of neurodegenerative diseases and their impact on families. We also delve into the problematic nature of the 'standard of care' in oncology, highlighting the critical need to advocate for yourself.
Check out the article Samira referenced towards the end of this episode here.
My Cancer GPS™ is coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!
Key Highlights:
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Self-advocacy is critical in getting the care that’s best for you, so ask questions, and get involved. Your healthcare team cares for you and wants to see you back on your feet, but no one can care more than you do.
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Caregivers need to look after themselves, too. It can feel like there’s no room for yourself, but you must find joy. Find joy so that you can cherish whoever is under your care.
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The role of a caregiver is both rewarding and demanding. Being an advocate for a loved one is a necessary responsibility because the standard is not always the best care you can receive for your individual case.
About our guest:
Chris Schuler is a staunch brain cancer awareness advocate. He was the primary caregiver to his late Dad, Donald Schuler, who was diagnosed with GBM in July 2021. He works closely with organizations across the globe, amplifying their critical work and building key relationships to further improve outcomes for patients. He recently finished a year-long consultancy with Cure Brain Cancer Foundation, an Australian non-profit dedicated to improving outcomes in brain cancer. He's currently a Venture Partner with Varia Ventures, working to raise awareness for emerging venture funds dedicated to uncovering and funding innovative discoveries to improve brain health. He also works closely with SageMedic, a precision oncology start-up supporting patients looking for the most effective treatment for cancer. Chris continues on as his Dad's caregiver — caregiver to his life, legacy and memory.
At 33 minutes and 18 seconds: “From that very moment, I went from being a lot of things in my life, being a son, a nephew, a grandson, a friend, eventually an uncle, a husband, a father. Now I am a caregiver. I want to say nothing prepared me for that. Everything prepared me for that. The way I was raised, everything I experienced in my life, every up, every down, every victory, every rejection, everything led to this moment where I am now my dad's caregiver with my mom. I call myself the primary caregiver because there was something she couldn't do for him, and how do you become an advocate? How do you take on what seems insurmountable? And I say to any listeners, you can do it. You have what's in you to do it, to be the very best caregiver, because all you need is one prerequisite to be a caregiver. You need to be able to love. If you can love, you are a caregiver.”
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
In this episode, we speak with Dr. Eneida Nemecek, a pediatric oncologist specializing in bone marrow transplants and cellular therapies. Dr. Nemecek provides an in-depth look at the science behind these treatments, the process patients go through, and the challenges faced by both patients and caregivers. She emphasizes the importance of caregiver well-being, particularly sleep, and discusses a PCORI study on stress management for caregivers. The episode concludes with a rapid-fire Q&A session covering key terms and concepts in the field.
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features these PCORI studies (Study #1 & Study #2) by Mark Laudenslager, PhD.
Key Highlights:
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Bone marrow transplant involves replacing a patient's immune system with a healthier one, either from a donor or the patient's own modified cells.
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Caregiver quality of life, especially sleep, is crucial for patient outcomes in bone marrow transplant cases.
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CAR-T therapy is a form of cellular therapy where white blood cells are engineered to attack specific targets, offering new treatment options for certain cancers.
About our guest:
Dr. Eneida Nemecek is a Professor of Pediatrics and Medical Oncology and Associate Director of Clinical Research at the Knight Cancer Institute-Oregon Health & Science University (OHSU) in Portland, Oregon. Native from Puerto Rico, she completed her Pediatric residency at Case Western Reserve University in Cleveland, OH and Pediatric Hematology/Oncology fellowship at the Fred Hutchinson Cancer Research Center in Seattle, Washington. She has a Master in Epidemiology and Clinical Research from the University of Washington and a Master in Healthcare Business Administration from OHSU. Dr. Nemecek is an established clinical researcher with over 20 years of experience in trials ranging from investigator-initiated early phase to large, multicenter studies funded by a variety of mechanisms. Her research focuses on bone marrow and cellular therapies, experimental oncology therapeutics and health services research addressing disparities in access for underrepresented groups. She has served in leadership roles in steering committees for several national cooperative research groups. She has also held elected leadership positions as director, trustee or committee chair in multiple professional organizations.
The Your Cancer GPS™ platform is coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!
Key Moments:
At 14:40 “Sleep is healthy. If you are the one caregiver of a patient and you get sick because you're stressed and not getting enough rest, then you get affected and your patient gets affected too. It's a very important part of our health. Eat, sleep, get some time for yourself. Those are all things that just need to happen. The way that we're designing medicine today, sometimes we forget that the caregiver is kind of a patient. If we lose that person, we are in serious trouble. I can tell you multiple examples about when that has happened and how difficult it is for the medical team and for the family.”
At 28:03 “I think it's really important to remind ourselves that the brain, our psychosocial life, is part of our health. I think sleep, exercise, diet studies, anything that can improve the life of people should be studied in a very organized setting, just like you study drugs, if we're going to do this well.”
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
In this episode of the Patient From Hell, Samira sits down with Megan-Claire Chase, known in the cancer community as "Warrior Megsy." Megan-Claire shares her deeply personal experience of navigating breast cancer and its aftermath. From managing the physical and emotional toll of treatment to finding new ways to regain a sense of self, Megan-Claire offers a powerful account of resilience, self-advocacy, and the importance of asking for help. Her humor, storytelling skills, and openness bring a refreshing perspective on survivorship, making this an inspiring conversation for anyone facing adversity.
Key Highlights:
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Self-advocacy is critical in healthcare, and sometimes, switching doctors is necessary to ensure your voice is heard.
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The emotional impact of cancer extends beyond treatment, often manifesting in long-term physical pain and identity challenges.
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Asking for help isn't a sign of weakness—it's a vital step in dealing with the overwhelming aspects of cancer.
About our guest:
Megan-Claire Chase, also known as Warrior Megsie, is the Breast Cancer Program Director and host of the Our BC Life podcast at SHARE Cancer Support. As an invasive lobular carcinoma (ILC) breast cancer survivor and passionate patient advocate based in Atlanta, GA, Megan-Claire is a dedicated champion for the needs of breast cancer patients, particularly in addressing the disparities faced by minoritized communities and those in the adolescent and young adult (AYA) communities.
In addition to her pivotal role at SHARE, she serves on Bayer Oncology's Digital Patient Council, is a patient advocate for the Oncology Data Advisor Editorial Board, and recently joined the Worth the Wait Charity advisory board. She also contributes as a writer and advisory board member for Patient Power, amplifying the voices of breast cancer patients.
Megan-Claire’s advocacy efforts include participating as a panelist on Leveraging Technology to Support Patient-Centered Multidisciplinary Oncologic Care at the 2024 ASCO Quality Care Symposium, co-authoring a podcast and infographic on genetic testing in metastatic breast cancer, collaborating with Pfizer on the Action Guide to Disrupt Inequitable Health Outcomes, and sharing her personal journey on PBS’s Beyond Cancer through Stories from the Stage. Her work has been spotlighted in notable publications like The New York Times, People Magazine, Cancer Health, Cancer Today, and CURE Magazine.
Beyond her cancer advocacy, Megan-Claire is a versatile voiceover actor, a dedicated social justice activist, and a proud cat mom to Phoebe.
My Cancer GPS™ is coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!
Key Moment:
21 minutes: “Something that people outside of Cancerland may not fully understand is the side effects from the toxic treatments, the side effects from multiple surgeries, the pain that some get fades, they heal, but for others, like moi, I really got the motherload of permanent damage, permanent side effects, effects that happen like a year, two years post cancer. And so I, as I'm talking to you right now, I am in pain. And I often have people say, ‘you don't look like you're in pain.’ And I'm like, look, it's not Halloween yet. I don't want to scare you. If I looked how I truly, truly felt on the daily, you would think you're in a scary movie. And so, dealing with multiple types of pain, chronic pain, is something I never, ever thought would be part of my cancer experience."
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
In this episode of the Patient From Hell, we talk to Mike and Megan Scherer, a couple who faced fertility challenges after Mike's testicular cancer diagnosis at age 26. They share their personal journey through cancer treatment, fertility preservation, and eventually becoming parents through assisted reproductive technologies. The Scherers also discuss their non-profit organization, Worth the Wait, which provides financial assistance and support to young adult cancer survivors facing fertility issues. Their story highlights the emotional, financial, and medical complexities of fertility preservation and family building for cancer survivors.
Key Highlights:
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Cancer treatment can significantly impact fertility, making it crucial for patients to discuss preservation options immediately after diagnosis.
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The financial burden of fertility treatments for cancer survivors is substantial and often not covered by insurance, as was the case for the Scherers.
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Through their non-profit Worth the Wait, the Scherers aim to alleviate the financial barriers preventing young adult cancer survivors from pursuing fertility preservation and family-building options.
About our guests:
Mike Scherer is a cancer survivor, co-founder and chief visionary of oncofertility charity Worth the Wait. He is passionate about helping other young adult cancer survivors lead meaningful lives in survivorship. He has shared his perspective with clinical and industry audiences nationally through speaking engagements, articles and podcasts. When he’s not advocating for cancer awareness, he enjoys spending time with his family and cycling. Mike is also a managing partner of Summit Financial Strategies, an investment management firm.
Megan Scherer is the co-founder and executive director of Worth the Wait. Megan advocates for patients and oncofertility nationally as a speaker and patient advocate. She enjoys the personal relationships she forms with young patients Worth the Wait assists and loves providing hope and inspiring others with her story as a caregiver, infertility patient, and mom to son Elliott. Before co-founding Worth the Wait in 2021, Megan held marketing communication leadership roles in the health insurance industry.
Manta Maps are coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!
Key Moments:
At 29 minutes: "We look into the eyes of our child now and we don't think, man, you were an expensive little guy. We just think, we're so fortunate to have you here and be able to raise you. When we sat down to start Worth the Wait, we said, okay, if we were able to remove that financial barrier, would you be willing to go through what is also a difficult process? And the answer was yes." - Mike Scherer
At 32 minutes: "There's so many stories of AYA patients every week who are reaching out for assistance and there are people who are maxing out their credit cards to pay for [fertility treatments]. There's people I know that are selling t-shirts, that are selling popcorn, that are doing these things because this is the one thing in their life that they want to have a chance at." - Megan Scherer
At 38 minutes: “"You don't have time to waste and depending on the diagnosis you may have a very short window. Banking sperm takes a day but preserving eggs can take weeks, so you want to know upfront." - Megan Scherer
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
In this captivating episode of "The Patient From Hell" podcast, Dr. Sydney Barned shares her unique perspective as both a practicing physician and a seven-and-a-half-year survivor of stage 4 non-small cell lung cancer (NSCLC). Dr. Barned offers invaluable insights into the challenges of navigating a cancer diagnosis, the importance of patient advocacy, and the gaps in understanding between doctors and patients. Her story highlights the need for better communication, education, and support in cancer care, while also shedding light on the personal struggles and triumphs of living with cancer. We also delve into the Patient-Centered Outcomes Research Institute (PCORI) funding study comparing the impact of using different types of material to understand palliative chemo for advanced cancer patients.
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Debra Schragg, MD, MPH.
Key Highlights:
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Dr. Barned's dual perspective as a doctor and cancer patient provides a rare and insightful look into the complexities of cancer care.
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The episode emphasizes the importance of patient education and self-advocacy in navigating cancer treatment and palliative care.
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Dr. Barned's experience reveals gaps in doctor-patient communication and understanding, particularly regarding palliative chemotherapy.
About our guest:
Dr. Sydney Barned, is a dedicated physician and lung cancer advocate committed to advancing research, raising awareness, and supporting policy initiatives in the field of oncology. Diagnosed with stage IV lung cancer at the age of 33, she brings a unique perspective to lung cancer advocacy, combining her firsthand experience with her medical expertise to drive positive change in the fight against cancer. With a background in Internal Medicine and a focus on hospital medicine as an internal medicine hospitalist, Dr. Barned is actively involved in community outreach and educational initiatives aimed at empowering patients and healthcare professionals alike.
Key Moments:
At 3 minutes : "So I had to do a lot of compartmentalization and it was some a lot of the times it was tough especially when I got patients who were younger and you know they reminded me of myself.... I've diagnosed patients with cancer, treated the side effects of cancer, you know, had to have those difficult conversations where I'm like,’ look, treatment is not working. We need to switch to more comfort based measures.’ I've had to bring in hospice and, you know, I've even had to pronounce time of death. So I've seen the entire spectrum and I mean, one of the things that it definitely does make me, it makes me very grateful for the life that I have."
At 30 minutes: "Most patients when you're going through a diagnosis of cancer, you are not necessarily understanding everything because the emotions that are tied to hearing you have cancer. So just hearing that in itself is a blow, much less hearing you have advanced disease. That's going to be another blow as well. And a lot of the times when doctors are talking to you after hearing those two statements, it kind of sounds like, again, I'm going to be aging myself, but you remember Charlie Brown? When the adult was talking... you didn't hear anything. And that's kind of what it's like when a patient is hearing all of this information from their doctors."
Manta Maps are coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!
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Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
In this episode, we hear the remarkable story of Wenora Johnson, a three-time cancer survivor who faced the challenges of job loss, single motherhood, and pursuing an education, all while navigating her diagnoses. Wenora shares her experiences with warmth, humor, and wisdom, offering valuable insights for anyone facing adversity. We delve into the cultural taboos surrounding cancer in her community, the critical role genetics played in her health journey, and why involving loved ones in our health decisions is so essential. Wenora’s story goes beyond survival; it’s about how she turned her experience into a passion for patient advocacy, making a lasting impact in the cancer community.
Key Highlights:
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Given the significant role genetics play as a risk factor for cancer, it is important to keep your family and loved ones informed.
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Give yourself grace; you don’t have to become a patient advocate fighting for systemic change. It’s perfectly okay if your focus is simply on getting through today.
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Having a supportive healthcare team that genuinely wants to see you succeed is crucial—not only for the effort they’ll put forth but also for inspiring you to stay healthy and proactive in your treatment.
Feeling lost in your cancer experience? We've created interactive, disease-specific maps to help you see all the paths you might face. Launching this Fall! Sign up for access here.
About our guest:
Wenora Johnson is a three-time cancer survivor (Colorectal, Endometrial and Basel Cell Carcinoma), Volunteer Research/Patient Advocate and Navy Veteran. As a volunteer with various organizations, she shares her understanding of policy; research; genetic testing; hereditary cancer; patient engagement and clinical trials with patients and the healthcare community. Being a Lynch Syndrome patient, Wenora advocates for genetic testing and awareness. She serves on various panels and review boards to provide extensive feedback on her role as a patient and research advocate with organizations such as CAP (College of American Pathologist); Clinical Trials Curator for Fight CRC; FORCE (Facing Our Risk of Cancer Empowered) Research Advocate, Peer Navigator and Board Member; a Consumer Reviewer for the DoD Peer Reviewed Cancer Research Program; a PCORI Ambassador and Clinical Trials Panel Member; IRB for local community hospital; NRG Oncology Patient Advocate Committee Member and the AACR Scientist~Survivor Program - presenting a poster on financial toxicities and disparities among minority patients; Center for Genomic Interpretation (CGI) Acceptable Thresholds Committee Board Chair and an External Advisory Board Member for WCG Clinical Services.
She has written various patient advocate blogs and participated as a guest speaker/panelist and serves as the Community Patient Advocate for the University of Chicago Comprehensive Cancer Center and the University of Chicago Cancer Center. Wenora works in administration in the greater Chicagoland area and enjoys reading and traveling with her family.
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Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
In this episode we speak with Roger Royse, a Silicon Valley lawyer and pancreatic cancer patient. Roger shares his experience navigating the healthcare system, discussing his approach to treatment, the emotional challenges he faced, and the insights he gained along the way. He emphasizes the importance of being proactive, questioning assumptions, and seeking multiple medical opinions. Roger also delves into the anger he felt during his experience and how he learned to channel it productively. Throughout the conversation, he offers valuable advice for both patients and their loved ones, highlighting the need for personal responsibility and careful communication.
Key Highlights:
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The importance of questioning medical assumptions, seeking multiple opinions, and being proactive in your treatment experience.
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By controlling and channeling emotions like anger, patients can become more effective advocates for their own care.
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An overview of the dos and don'ts of supporting a loved one facing a cancer diagnosis including the importance of careful communication, the power of offering practical help, and avoiding insensitive or unsolicited advice.
About our guest:
Roger Royse is a startup lawyer in Silicon Valley and a pancreatic cancer patient. Roger was diagnosed with stage 2B pancreatic adenocarcinoma in July 2022 after taking a multi cancer early detection blood test. After 6 months of chemotherapy and surgery and an experimental cancer vaccine, Roger currently has no evidence of disease as of July 2024.
Roger has been active for many years with the Leukemia Lymphoma Society having been its Bay area Man of the Year in 2012 and since his diagnosis has joined the board of the Cancer Patient Lab.org, a non profit dedicated to evidence based therapies and has created a community for cancer therapy technology startups to demo their solutions in person and online at www.cancerstartup.com. Roger has since testified to an FDA Advisory committee on multi cancer early detection and has been featured in many publications including the Wall Street Journal on MCED.
Roger believes in the patient being proactive and taking personal responsibility for their health and being very involved in their treatment decisions based on evidence based treatments.
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Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
In this episode we speak with Bellinda King-Kallimanis, PhD, an expert in oncology research and patient advocacy. Bellinda shares her diverse experience in the field, from academia to the FDA and now her role at LUNGevity Foundation. The conversation covers various aspects of lung cancer, including screening procedures, risk factors, and common misconceptions. Bellinda emphasizes the importance of early detection and addresses the stigma associated with lung cancer. We also delve into the Patient-Centered Outcomes Research Institute (PCORI) and a study comparing the impact of using different types of material to communicate screening information to patients. The episode also includes a rapid-fire Q&A section, where Bellinda provides concise explanations of key terms and concepts related to lung cancer.
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Robert J. Volk, PhD.
Key Highlights:
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Lung cancer screening compliance is strikingly low at 5-6%, despite high risk for those with tobacco history, and additional requirements may further complicate the process.
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Stigma surrounding lung cancer, primarily due to its association with smoking, can deter people from seeking screening or discussing their health history, despite the fact that people with no tobacco history or people who have not smoked can also develop the disease.
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Patient involvement in research, through initiatives like citizen science programs, and improved communication of complex information are crucial for advancing lung cancer care and understanding.
About our guest:
Dr. Bellinda King-Kallimanis is Senior Director of Patient-Focused Research at LUNGevity Foundation. In her work at LUNGevity she aims to ensure that patient and caregiver voices are incorporated in decision making across a wide variety of stakeholders and has built a Citizen Scientist program to aid this. Prior to joining LUNGevity, she worked at the US Food and Drug Administration Oncology Center of Excellence on the Patient Focused Drug Development team. There, she worked on the development and launch of Project Patient Voice, a resource for patients and caregivers along with their healthcare providers to look at patient-reported symptom data collected from cancer clinical trials.
Bellinda also has experience in industry and academia and has published over 70 peer-reviewed papers. She received her Bachelor of Social Science and Master of Science in applied statistics from Swinburne University of Technology in Melbourne, Australia, and her PhD in psychometrics from the Academic Medical Center in Amsterdam, Netherlands.
Key Moment:
At 38:39 “I've taken it on to try to improve my communication as a researcher, because we spend so many years reading complex materials that you just start talking that way. It does not resonate with my family. They'll be like, what are you talking about? Who do you think you are? So if we really want to be able to talk to people and connect the work we do, then we have to be able to talk about it in much simpler terms. I really do think it's so important for us all to work on our abilities to make sure that we are speaking to each other versus, I've been in plenty of conversations where people are not speaking, they're just speaking around each other because there's a gap in the understanding and healthcare is already like very complex and cancer is really scary. So,just being aware of not talking in acronyms all the time.”
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Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Cancer care is difficult enough to navigate as someone with little to no healthcare/biology background, but what does it mean when a physician faces similar challenges within the healthcare system? Dr. Jean-Luc “JL” Neptune shares his compelling caregiver story of caring for his mother and father's cancer diagnoses simultaneously with the help of his sister. We delve into how his experience impacted his career, his outlook into the flaws of the healthcare system, and his perspective on what patients (and caregivers) can do to get the most out of their care.
Key Highlights:
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Access to contextualized information is not easy; information online without context can be overwhelming and not specific to the patient.
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The best source of information about your diagnosis and prognosis is likely a doctor in the field, but finding one with the time to fully inform you is not an easy feat either. Fee-for-service care is the current healthcare model, which arguably promotes quantity over quality. However, the tide is slowly but surely shifting towards value-based care.
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To achieve the highest quality care today, the best thing you can do is advocate for yourself and seek multiple expert opinions. Keeping track of your symptoms is a good idea for effectively and efficiently contextualizing your treatment plan with your provider(s).
About our guest:
Jean-Luc (“JL”) Neptune, MD MBA is a physician executive, digital health leader, investor and advisor with 20+ years of experience in the health innovation space. Dr. Neptune most recently served as the CEO, Chief Medical Officer, and co-founder of Suntra Modern Recovery, which provided early addiction intervention and treatment services at scale. Prior to Suntra Modern Recovery Dr. Neptune was the founder of Athletik Health Inc., which operated modern sports medicine clinics offering the “athlete in everyone” outstanding clinical care and customer service. Dr. Neptune served as entrepreneur-in-residence at the Hospital For Special Surgery (“HSS”), the #1 rated orthopedic hospital in the United States, working closely with the leadership team of the HSS Innovation Institute. Dr. Neptune was also General Manager at Blueprint Health where he oversaw investments into dozens of digital health companies (including RubiconMD, NexHealth, Moving Analytics, and CleanSlate UV), and continues as a partner in the Blueprint investment funds. Dr. Neptune earned a BA from Columbia College at Columbia University, an MD from the Columbia College of Physicians and Surgeons, and an MBA at the Wharton School. Dr. Neptune completed a residency in internal medicine at New York Presbyterian Hospital and is licensed to practice medicine in the state of New York.
Key Moments:
At 10:55 “I've often debated with people online about access to information and really as a patient, should you be like going on the internet and looking at all these sites? And my argument is you shouldn't because unless you can contextualize this information, make it specific to you and cut out all of the noise from the signal, you're probably only making yourself more stressed out, more confused by seeking information from all these places.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
Brad Powers, the co-founder of Cancer Patient Lab shares his insight on a multitude of topics such as: the challenges of innovating healthcare, the importance of personalized care, and Brad’s personal experience with cancer.
Key Highlights:
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Large organizations are resistant to change, making it difficult to innovate within the healthcare industry.
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Personalized care is the future of healthcare, allowing for tailored treatments and better outcomes.
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Patients should educate themselves, seek second opinions, and actively participate in decision-making about their care.
About our guest:
Brad Power is the co-founder and CEO of the Cancer Patient Lab, a patient-led learning community for cancer patients and caregivers navigating testing and treatment decisions beyond the standard of care, and founder of the CancerHacker Lab, which also helps startups that are disrupting the status quo in cancer care. In 2018 Brad was a process innovation researcher and consultant with over 35 years experience and an author of over 75 articles for the Harvard Business Review when he was diagnosed with lymphoma. Brad went through a standard course of chemotherapy, which led to "no evidence of disease" for four years, until it recently recurred. In late 2020 Brad was talking to his friend Bryce Olson, who said he had hit a wall in keeping his metastatic prostate cancer at bay. Brad suggested to Bryce that they could run a hackathon (a collaborative effort of a diverse crowd of experts) for him to find his best next treatment option, which they did. Brad then hosted two hackathons: one for Linnea Olson, a lung cancer patient, and another for Kasey Altman, a young woman with a rare cancer. In 2022 Brad launched Cancer Patient Lab with two advanced prostate cancer patients. Brad hopes to make hackathons and other resources available to many more patients who are facing complex testing and treatment decisions. Brad is a founding member of ennov1; an advisor to 4DPath, Alva10, Cancer Commons, Consuli, Rabble Health, and Travera; and is an active contributor to the Personalized Medicine Coalition.
Key Moments:
At 2:04 “Software is easy to change and people are hard to change.”
At 20:10 “[The podcast] is named after a book called The Patient from Hell. It's written by a Stanford Prath who got diagnosed with a super rare type of cancer. And I was working at a medical diagnostic company when I got diagnosed. The chief medical officer gifted me the book and he said, you need to read this. And I happened to read it right before I started chemo. And that was the fundamental thesis of the book, was that we're sitting in a world of penicillin where most medical professionals are trained to think at the population level. It's all cohorts of patients. You show up, you fit an archetype, you fall into that bucket. That cohort of patients is treated by my standard care that has been tested on that cohort. If you have any amount of variance from that cohort's factors, you're basically lost because the medical professional doesn't actually know what to do with you because they are not trained to think empirically.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
Janice Cowden, retired nurse and patient advocate, shares her remarkable triple negative breast cancer (TNBC) story. Five years following successful treatment for stage one breast cancer in 2011, Janice was diagnosed with a stage 4 metastatic TNBC recurrence. As of today she has 8 years of no evidence of disease (NED) under her belt. She shares how she stumbled upon the cancer community that inspired her to become the advocate she is today and the uncertainty that comes with NED. She also shares how she copes with losing friends in the cancer community through her patient advocacy work. We also have a rapid fire Q&A where she answers questions surrounding various medical terminologies, diagnoses, and more to keep you in the loop.
NOTE: There is one clarification from the rapid fire Q&A session. The definition of disease free survival (DFS) is the time from random assignment (used in clinical trials and research studies to assign participants to different groups) to cancer recurrence or death from any cause (Gutman SI, Piper M, Grant MD, et al. 2013).
Key Highlights:
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Metastatic breast cancer (MBC) is stage four breast cancer that has spread to distant sites in the body.
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Finding events and communities centered around cancer not only supports cancer patients emotionally and socially, but can also serve as informational hubs. Being proactive in learning about your diagnosis, whether it’s through community and/or research on your own time, can help you feel confident with the choices you make.
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While finding a community of other cancer patients can help, unfortunately this disease means that you will lose friends you make in these settings. It doesn’t necessarily get easier, but finding an outlet to cope with such losses is vital to your wellbeing.
About our guest:
Diagnosed with Stage IV triple negative breast cancer in 2016, five years after an early-stage breast cancer diagnosis, Janice launched into patient advocacy following training through Living Beyond Breast Cancer’s (LBBC) Hear My Voice Outreach program in 2017. As a peer-to-peer support and research patient advocate, Janice is passionate about supporting others with metastatic breast cancer, in addition to continually furthering her scientific knowledge base of this disease, treatments, and clinical trials, which she acquires through attending scientific breast cancer conferences and webinars. Janice is involved with several patient-founded and led organizations including PCDI, GRASP, and Project Life MBC. As a trained peer support volunteer, she is founder of an international online peer support group for patients newly diagnosed with MBC. She serves on the Board of Directors for METAvivor Research and Support Inc., and is an Advisory Board member for Project Life MBC. She is an individual member of the Metastatic Breast Cancer Alliance. When she’s not busy with advocacy work, Janice enjoys traveling, reading, outdoor activities, and spending time with family, including her husband, two adult children and three grandchildren.
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
In this episode, Dr. Doug Blayney, oncologist, former President of the American Society of Clinical Oncology (ASCO), and the Chief Medical Officer of Manta Cares, discusses the latest advancements in breast cancer treatments presented at ASCO’s 2024 Annual Meeting. He highlights the significant progress in antibody drug conjugates (ADCs), which are engineered to specifically target cancer cells, offering new hope in cancer treatment. The Manta Cares team also attended the ASCO conference, presenting an abstract for a personal treatment management tool designed to assist cancer patients and survivors (and their families!) in navigating their next steps – Manta Maps! For more information, visit our website here and join the list to request access to the digital platform this fall here.
Key Highlights:
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Advancements in breast cancer treatment were highlighted at the ASCO Annual Meeting this year, including alternatives to chemotherapy and the emergence of antibody drug conjugates (ADCs).
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Checkpoint inhibitors help the immune system recognize and attack cancer cells by removing the "brakes" that prevent the immune system from targeting the cancer.
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Personalized approaches to treatment based on patient age, co-morbidities, and cancer type, were highlighted, leading to more effective and tailored treatments.
About our guest:
Dr. Doug Blayney is an oncology physician who specializes in breast cancer. His research focuses on quality improvement in cancer care systems, new drug development, and patient experience improvement. At the American Society of Clinical Oncology (ASCO), he was founding Editor-in-Chief of its flagship practice journal, and as President, started the ASCO Quality Symposium and began planning for ASCO’s CancerLinq. He was a founding member of the National Comprehensive Cancer Network (NCCN) Growth Factor Guideline panel, and is a past member of the U.S. Food and Drug Administration’s Oncology Drugs Advisory Committee and the NCCN Board of Directors. Dr. Blayney leads the Manta Cares Scientific Advisory Board as the Chief Medical Officer.
Key Moments:
At 1:05 "As a doctor who treats breast cancer, I thought it was important that we have a lot of alternatives to chemotherapy. So even though some of the studies were portrayed as negative because they didn't improve overall survival, I think pushing out the time a patient gets chemotherapy and its associated toxicities is a major advance.”
At 21:14 "We need better assays to predict who's going to respond to these ADCs (Antibody Drug Conjugates). We're learning that they're here to stay and they're a great benefit to many with breast cancer and other cancers."
At 35:20 “It's thought that you and people without known cancer, develop one or two cancers a day, small little bitty ones and our body's immune system recognizes that as foreign and eats them up and the cancer doesn't grow and proliferate. One of the ways cancer grows, especially in adults, is immune escape. So somehow the brakes are put on the immune system at some point when that cancer develops. The IO checkpoint inhibitors are thought to work by taking off those brakes.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
Cecilia Lang-Ree shares her experience as a childhood survivor of acute lymphoblastic leukemia. She shares some of her memories as an inpatient, her struggles with fitting in with her peers at school, and the evolution of her identity in relation to her survivorship. She also shares her discovery of her fertility issues and the importance of discussing fertility as early on as possible as a cancer patient. She ends the episode with powerful advice about owning your survivorship and the resources available for cancer survivors.
Key Highlights:
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Being a cancer survivor, especially at a young age, significantly affects one's life and identity, often leading to phases of uncertainty, denial, and willful ignorance. Embracing your survivorship can lead you to people who are also in your shoes, and through connections you can find resources that will support your survivorship-specific needs.
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The AYA (Adolescent and Young Adult) community plays a crucial role in providing support and understanding for young cancer patients.
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Discovering fertility issues can be emotionally challenging, emphasizing the need for early conversations about fertility options like egg and embryo freezing. Survivorship clinics and self-advocacy are key in navigating these preservation options as well as other side effects of cancer treatments.
About our guest:
Cecilia Lang-Ree is a childhood leukemia survivor, advocate, and healthcare Product Manager born and raised in the Bay Area. Since her diagnosis at age 4, Cecilia's personal and professional mission has become to make prevention information accessible to all. At work, she combines product strategy, user savvy, and her academic background in chronic disease prevention & behavioral design to pioneer consumer products that help people lead healthier, happier lives.
Currently, Cecilia is the Senior Product Manager at Biolinq, a medical device company developing a minimally invasive glucose monitoring sensor for metabolic health. Cecilia holds an M.S. and B.A. from Stanford University, and outside of work enjoys hiking, skiing, trying new restaurants in San Francisco, and hanging out with her husband, Christian, and beloved family!
Key Moments:
At 6:55 “I was very lucky that I had parents who could read scientific journal articles. They could read my clinical protocol and understand the potential side effects and take action to prevent them. They could be my advocates with doctors and nurses, but I saw firsthand that most of the other kids in the hospital did not have that. Many were children of undocumented immigrants or folks just did not have access to that kind of information. And so for me, that has really sparked, in my career, this passion for prevention, early detection, and really knowing that health data and health knowledge is power.”
At 11:39 “I didn't want the attention. I wanted so badly just to fit in and be normal. I didn't want anybody to know, push it away, push it away, push it away. Don't put this intention on me. I never wanted anybody to mention the C word, cancer, because when the C word got dropped in the classroom or anywhere else, it just changed the energy in the room. It just sucked all the energy out and people look at you differently.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Emily Capilouto, a medical anthropologist and cancer advocate, discusses the topics of medical anthropology, fertility preservation, and IVF. She also shares her work in oncology and raising awareness about prostate cancer. The conversation includes a rapid-fire Q&A session on fertility treatments and options. The main takeaways include the importance of early discussions about fertility for cancer patients, the role of reproductive endocrinologists in managing fertility treatment, and the various options available for creating a family outside of IVF. Emily shares her personal experience with IVF and the challenges she faced due to legal and financial barriers where you’ll probably find some relatable issues that extend beyond fertility treatments.
Key Highlights:
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Early discussions about fertility are important for cancer patients and their families.
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Fertility preservation techniques, such as egg freezing and embryo freezing, can help cancer patients preserve their fertility. There are also various options available for creating a family outside of IVF, including surrogacy, adoption, and fostering.
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Legal and financial barriers, such as lack of insurance coverage and restrictive laws, can significantly impact access to not only IVF care but other branches of medicine.
About our guest:
Emily completed a Masters of Public Health in Epidemiology at the University of Alabama at Birmingham in 2012 and a Masters of the Arts in Medical Anthropology at the University of Kentucky in 2018. Her academic research focused on the detection and prevention of reproductive cancers and access to reproductive healthcare in domestic and international settings. She has worked in the nonprofit sector for the last fifteen years at the local, state, and federal level. When not focusing her efforts on health promotion, Emily is forever working to complete her classical Pilates teacher certification, loves curling up with a good mystery or thriller novel, and enjoys spending time with her friends, family, and husband.
Key Moments:
At 14:40 “So many cancer patients choose to use fertility treatments because there is a chance that treatments and surgeries that they will undergo to fight cancer can impact fertility. That is true for both men and women.”
At 35:59 “The Alabama Supreme Court ruled that embryos have the same legal status as children, disrupting IVF care in the state. Most clinics, including mine, halted services due to potential legal risks. This ruling stemmed from a lawsuit referencing the Wrongful Death of a Child Act after a patient's embryos were accidentally destroyed. The plaintiffs did not intend for their lawsuit to affect other families seeking IVF, but the ruling had widespread consequences. For about three weeks, the legal status of embryos as children meant mishandling them could be considered homicide, and transferring embryos out of state was impossible.”
At 49:47 “I had someone this week tell me that navigating cancer is like getting a PhD. You have to get the PhD to be able to navigate cancer. I had another person tell me that the trauma of getting through the healthcare system is worse than the trauma of getting the cancer diagnosis.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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This episode features Aurora Lucas sharing her experience navigating stage 3A lung cancer, starting from her symptoms and misdiagnosis to her eventual diagnosis and targeted treatment. She shares aspects of her story that all of us can relate to: insurance problems, delays, being rushed into life altering decisions, and more. She also talks about the impact of her diagnosis on her fertility and the decision to undergo fertility treatments before starting treatment. She highlights the need for open conversations about taboo topics like fertility in young cancer patients. Today Aurora is active in patient advocacy and shares her story with the hope that listeners like you can find comfort and community in this tough diagnosis.
Key Highlights:
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Advocating for oneself is crucial in the healthcare system, especially for cancer patients. This includes getting a second opinion to explore alternative treatment options and biomarker testing, engaging in open conversations about taboo topics with your doctors, and connecting with survivor communities and support through social media.
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Misdiagnosis and delays in diagnosis can significantly impact a patient's treatment journey. Newly diagnosed patients should try to come prepared with questions and a notebook to medical appointments, and seek support from survivor communities for accurate information and guidance.
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Grappling with the uncertainty about the future is a common struggle for cancer patients. Finding ways to cope, live in the present moment, and reevaluate priorities, including the importance of healthy relationships, are key aspects of navigating a cancer diagnosis.
About our guest:
Aurora hails from the land of 7,000 islands, the Philippines. Having left her country at the age of 9 and becoming a part of the Filipino diaspora, Aurora continues to see the world from different perspectives. She is fluent in Tagalog, English, and is learning Spanish. Aurora was diagnosed with Non Small Cell Lung cancer at the age of 28, during her 2nd year of her EdD in Leadership program. She is now 31 years old, and in the final stretch of her EdD program. Aurora is fiercely committed to co-creating conversations that are centered on serving BIPOC patients, and their communities. During her free time, she loves looking for coffee shops, journaling, taking photos and videos, as well as learning new languages. You can find Aurora on: Substack, Instagram, TikTok
Key Moments:
At 07:46 "I remember this one resident, she held my hand and was staring at me. I thought, okay, she's trying to tell me something but can't because she's not my actual doctor. They kept staring at my hands, lifting them up, and looking at my fingers without explaining. I later found out that curving of your fingers can be a symptom of lung cancer."
At 15:55 "I distinctly remember being told about cancer not by the healthcare system or anyone I knew. Someone recently asked me, doesn't the doctor call you for an in-person appointment? I said, no, the odds are Dr. Google is the one telling you. That's the reality."
At 26:23 "Every time I saw that speaking up actually changed things to how I wanted, it gave me more confidence."
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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In this episode, Dr. Geoff Oxnard, a thoracic oncologist, discusses his career journey into oncology and shares insights from his experience treating lung cancer patients and conducting research. He emphasizes the increasing role of precision medicine and genomic and biomarker testing in guiding treatment decisions, providing examples of how identifying specific mutations can lead to dramatically better outcomes with targeted therapies. Dr. Oxnard also highlights the changing narrative surrounding lung cancer, with emerging stories of remarkable responses and newfound optimism as treatments improve. He provides perspective on navigating clinical trials, especially for rare genomic subtypes, and shares his motivations for transitioning from academia to the pharmaceutical industry, driven by a desire to have a larger impact on drug development and patient care.
Key Highlights:
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The increasing role of precision medicine and genomic testing in guiding lung cancer treatment decisions.
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The changing narrative and renewed optimism surrounding lung cancer, as treatments improve and stories of remarkable responses emerge.
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Dr. Oxnard's transition from academia to the pharmaceutical industry, driven by a desire to have a larger impact on drug development and patient care.
About our guest:
Geoff Oxnard, M.D., is the Vice President, Clinical Development, Global Head, Thoracic Cancer at Loxo@Lilly. Previously, Dr. Oxnard served as a thoracic oncologist and clinical-translational researcher at Dana Farber Cancer Institute and was also an Associate Professor of Medicine at Harvard Medical School. Dr. Oxnard received his BA in chemistry from Harvard University and his MD from the University of Chicago-Pritzker School of Medicine. He completed his residency in internal medicine at Massachusetts General Hospital and completed his fellowship in medical oncology at Memorial Sloan-Kettering Cancer Center. As an experienced oncologist, Dr. Oxnard is passionate about raising awareness of thoracic cancer and helping to make an impact on cancer care.
Key Moment:
8 minutes: “It starts with precision therapy, if I may, right? Once you have defined a specific molecular subtype, you've tried to sort of sift through the randomness of cancer care to find a group of patients who are going to behave in a similar way. Let's go into that for a moment, if I may, OK? EGFR mutations. If you give an EGFR inhibitor in the original studies to a bunch of patients on average with lung cancer, they live a couple months longer, but 10 % of those patients have fantastical responses that can last for a year or two or more. And so when you are a lung cancer patient, which are you looking for, by the way, to live on average two months longer or to have a fantastical response that can work for years? And of course, people are looking to be that outlier.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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In this episode, Kimary Kulig, PhD, MPH dives into the topic of cancer biomarkers. Kimary explains the difference between genes and proteins, germline versus somatic gene testing, and the critical importance of testing for both as biomarkers for treatment selection. She also describes the world of lung cancer biomarkers and the implications for treatment decisions. The conversation highlights the need for patients and their families to understand biomarkers and the impact those biomarkers have on treatment options. Biomarker testing in cancer patients is crucial for personalized treatment, but there are significant challenges and delays in the current system. The long turnaround time for biomarker testing can be harmful to patients with aggressive cancers who need immediate, targeted treatment. Kimary highlights that patients and their families need to be aware of the importance of biomarker testing and advocate for it.
Key Highlights:
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Biomarker testing should encompass both germline and somatic gene alterations. Germline testing is sometimes called “genetic testing” and identifies inherited mutations that appear in every cell in the body, whereas somatic gene testing detects mutations just in cancer cells, some of which can be targeted with specific drugs.
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There can be significant delays in biomarker testing results, which can be particularly harmful for patients with aggressive cancers. These delays often result in patients beginning chemotherapy while awaiting results, potentially impacting the efficacy of targeted therapies.
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Kimary discusses the lack of “reflex” testing in the current system, where biomarker tests are not automatically ordered based on the type of cancer. Implementing reflex testing could speed up the process, ensuring timely and appropriate treatment for patients.
About our guest:
Kimary Kulig’s professional career has spanned the academic, non-profit, large pharma, start-up, and healthcare technology ecosystems. Kimary is currently Owner and Principal of Kulig Consulting, providing advice and service to biotech start-up, pharmaceutical, and medical device companies who develop oncology products. She also provides individual Biomarker Navigation services to cancer patients as My Biomarker Navigator™. Kimary applied her unique training in immunology, molecular oncology, and epidemiology for 12 years at both Pfizer and Bristol Myers Squibb. Her pharma career is highlighted by research on lung cancer biomarkers which are now standard of care companion diagnostics. Kimary was also Vice President at the National Comprehensive Cancer Network (NCCN) where she oversaw all operations of its Outcomes Research Database. At Verily Life Sciences, Kimary was Head of Oncology Clinical Research and led digital pathology machine learning and wearable device oncology application development. Kimary continues in her goal to bring AI tools to clinical practice as a member of the Friends of Cancer Research Digital Pathology Working Group. Kimary received her PhD from New York University’s Institute of Graduate Biomedical Sciences and her MPH from Columbia University’s Mailman School of Public Health.
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Dr. Kozower, a thoracic surgeon, discusses the role of surgery in lung cancer treatment and the use of surgery in the diagnosis of lung cancer. The conversation then shifts to the PCORI study on lung cancer surveillance, where Dr. Kozower explains that the intensity of surveillance, such as the frequency of CT scans, does not impact survival rates for lung cancer patients in retrospect. We also discuss the future of lung cancer treatments.
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Dr. Kozower.
Key Highlights:
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Surgery is the primary treatment for early-stage lung cancer, serving both curative and diagnostic purposes.
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Surveillance, including regular follow-up visits and imaging, is crucial for detecting new lung cancers, especially in individuals with a history of the disease. Screening, on the other hand, aims to detect cancer in its early stages in individuals without symptoms.
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The narrative around lung cancer is changing due to advancements in molecular diagnostics, targeted therapies, and immunotherapy, offering more hope and optimism for patients.
About our guest:
Benjamin D. Kozower, MD, MPH is a Professor and Vice Chair of Surgery at the Washington University School of Medicine in St. Louis, MO. He completed his General Surgery training at the University of Connecticut in 2004 and his Cardiothoracic Surgery residency at Washington University in 2006. Dr. Kozower worked at the University of Virginia in Charlottesville, VA from 2006-2016 until returning to St. Louis in 2016. He is a General Thoracic Surgeon with a focus in thoracic oncology and directs the Thoracic Robotic Program at Barnes Jewish Hospital. He is also a clinical outcomes and health services researcher with funding from the Agency for Healthcare Research and Quality, the Patient Centered Outcomes Research Institute and the National Cancer Institute.
Key Moments:
At 7:29 "Surgery is the traditional treatment for early-stage lung cancer, patients who have small tumors typically confined to the lung when hopefully it can be curative."
At 14:50 "Everybody's followed after their cancer treatment. What's not clear is how often should we follow people?"
At 15:38 "The more frequently I'm seen, the earlier something could be detected and the better I'll do. Makes perfect sense. Unfortunately, I'm not sure it's true."
At 35:41 “Fortunately now we're starting to see the development of targeted therapies for specific [lung cancer] mutations. We're starting to see different types of therapies, and not just chemotherapy, but something called immunotherapy, which stimulates the body's immune system to help fight the cancer. So these things have dramatically changed the paradigm of how we treat lung cancers.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Abigail Johnston shares her experience as a patient with de novo metastatic breast cancer since 2017. She discusses the challenges she faced in getting a diagnosis and the systemic flaws of the healthcare system. Abigail emphasizes the importance of being an informed and proactive patient, and advocating for yourself even if you’re labeled “difficult.” Abigail’s fighter spirit in this episode is truly inspiring, and that’s what makes her a fellow patient from hell.
Key Highlights:
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Being an informed and proactive patient is crucial and so is seeking multiple opinions for informed decisions.
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Personalized, patient-centered care is essential for better healthcare outcomes, focusing on individual needs and preferences. There are fundamental flaws to the current system which treats patients like products on an assembly line. In other words, there’s lots of work that needs to be done to achieve personalized care.
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To be a “patient from hell” means that you won’t blindly follow what your doctors say; it means that you’ll ask questions, get multiple opinions, and do your own research before committing to a choice that will likely impact you permanently.
About our guest:
Abigail is a daughter, mother, wife, and attorney who was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in June of 201, close on the heels of a misdiagnosed early stage diagnosis in March of 2017. The first few months after her diagnosis were a whirlwind and full of many profound changes, including quite a few surgeries, but Abigail soon found her footing and started her blog "No Half Measures," where she talks about whatever comes to mind, within the lens of her Stage IV diagnosis. Abigail's boys, Liam and Malcolm, who were nearly 2 and nearly 4 at the time of her diagnosis, along with her husband, Elliot, make their own appearances in Abigail's advocacy since it truly is a family affair. For Abigail, advocacy is a whole life endeavor and she never does anything halfway; working with a variety of organizations, including, but not limited to:
1) Project Life Director of Mentorship and Legal Clinics
2) SurvivingBreastCancer.org, Board Member and Chair of MBC Leadership Committee
3) PIK3CA PathBreakers Co-founder
Outside of her cancer life, Abigail enjoys spending time with her family and very spoiled cat, reading, crafting, and dreaming up more ways to experience life with her boys.
Key Moments:
27:54: “So I tell all my doctors, I'm the boss, I'm the decision maker, you are my advisor. So you are telling me, because you know, as a, and I'll even talk about like as a lawyer, I would have expert witnesses, right? And they would help me understand or explain something that I'm unfamiliar with. So I tell them, I take responsibility for my decisions. I am leaning on you for your expertise. I am leaning on you for your recommendations, but I'm looking at this as your opinion, you're giving me your opinion, which is why I seek out multiple opinions from multiple doctors.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Dr. Karen Wernli, a Senior Scientific Investigator at Kaiser Permanente Washington Health Research Institute, explores the topic of preoperative breast MRIs in a PCORI funded study. The conversation provides insights into the emotional and practical aspects of living with cancer and the need for improved communication between researchers and patients. They touch on the classification of breast density, the importance of guidelines, and the need for mandatory reporting of breast density and discuss various topics related to breast cancer screening and decision-making. They also explore the concept of decision quality and how it is measured in research studies.
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Karen Wernli, PhD, Diana Miglioretti, PhD, Karla Kerlikowske, MD, Anna Tosteson ScD & Tracy Onega, PhD.
Key Highlights:
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Dr. Karen Wernli explores how breast density may influence decision quality and regret in treatment decisions involving preoperative breast MRIs.
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Breast density is not only a factor in masking breast cancers but also an independent risk factor for breast cancer itself, and patients are eligible for advanced screening if they have dense breasts.
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The discussion focuses on understanding how the use of preoperative breast MRIs affects decision quality and regret among women diagnosed with breast cancer. The study aims to shed light on whether additional imaging tests lead to increased confidence in treatment decisions or potentially cause regret.
About our guest:
Karen Wernli, PhD, is a Senior Scientific Investigator at Kaiser Permanente Washington Health Research Institute and Professor in the Department of Health System Science at Kaiser Permanente Bernard J. Tyson School of Medicine. She is a cancer epidemiologist and health services researcher whose work focuses on incorporating patient-centered outcomes to improve health care along the cancer care continuum, from prevention to survivorship. Her work spans several types of cancer (including breast and lung), and explores the impact of cancer in special populations (adolescents and young adults with cancer). Her research strives to answer critical questions at the confluence of patients’ needs and clinical priorities.
Research reported in this podcast was funded through a Patient-Centered Outcomes Research Institute (PCORI) award (PCS-1504-30370). Data collection for this research was additionally supported by the Breast Cancer Surveillance Consortium with funding from the National Cancer Institute (P01CA154292, U54CA163303), the Agency for Health Research and Quality (R01 HS018366-01A1), the UC Davis Clinical and Translational Science Center, the UC Davis Comprehensive Cancer Center, and the Placer County Breast Cancer Foundation. The perspective shared is solely the responsibility of Dr. Wernli and does not necessarily represent the official views of the Patient Centered Outcomes Research Institute or Kaiser Permanente.
Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Black women with breast cancer have higher mortality rates and recurrence rates than white women. On this episode, we speak with Ricki Fairley, breast cancer survivor and co-founder of TOUCH, The Black Breast Cancer Alliance and her daughter Hayley Brown, Director of Programs, about why health equity is such a major issue, and the need for better access to care and more research on the biology of the disease in Black women. This conversation explores various themes related to Black breast cancer, including access to healthcare, disparities in trials and outcomes, the need for personalized care, and the importance of education and advocacy. Don’t miss an important conversation with this mother and daughter dynamic duo!
Key Highlights
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Black women face higher mortality and recurrence rates of breast cancer compared to white women, indicating a significant disparity in outcomes.
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The drugs and treatments currently available are not as effective for Black women, highlighting a need for more research and tailored approaches. Additionally, there is a lack of representation of Black women in clinical trials, limiting the understanding of how treatments may specifically impact this population.
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Health equity and access to care are major issues in the Black community, impacting the ability of Black women with breast cancer to receive adequate care. Challenges include access to healthcare services, internet access for information, and representation in clinical trials. Addressing these challenges requires personalized care, education, advocacy, and activism to improve outcomes for Black women with breast cancer.
About our guests:
Ricki Fairley is an award-winning, seasoned marketing veteran that has transformed her strategic acumen into breast cancer advocacy. Ricki co-founded and serves as CEO of TOUCH, The Black Breast Cancer Alliance to address Black Breast Cancer as a unique and special disease state, with the overall goal of reducing the mortality rate for Black women. As a Triple Negative Breast Cancer Survivor/Thriver, Ricki’s personal purpose, passion, mission, ministry, and blessing is to bring focus, attention, research, science, and action to eradicating Black Breast Cancer, and supporting and coaching what she calls her “Breasties” through their breast cancer experience. She also actively assists pharmaceutical companies in revamping and designing their clinical trial recruiting materials.
Hayley Brown serves as the Director of Programs and Partnerships for TOUCH, The Black Breast Cancer Alliance. TOUCH is a non-profit organization focusing on eradicating Black Breast Cancer. Hayley’s goal is to bring the TOUCH programming to where all black women live, work, play, pray, and slay through local community outreach and national events. She is currently focused on reaching young black women and defining Black Breast Health. In combination with her teaching background and her passion for supporting breasties at all parts of their journey, Hayley plans to continue to educate, empower, and equip this amazing community to be the CEO’s of their own health.
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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In this episode, we interview Erika Bell, PhD from the Bay Area Cancer Connections (BACC) patient advocacy community about ductal carcinoma in situ (DCIS). Erika discusses the role of BACC in supporting cancer patients, the challenges of finding support during the pandemic, and the importance of patient advocacy organizations. She then dives into a detailed explanation of DCIS, its characteristics, and how it differs from invasive ductal carcinoma (IDC). We also delve into the decision-making process for treating DCIS, discussing options such as lumpectomy and mastectomy, and examine the role of sentinel lymph node biopsy in DCIS. This includes a detailed discussion on the findings of a study regarding sentinel lymph node biopsy in DCIS patients and its implications for treatment decisions. Above all, this conversation underscores the complexity of decision-making in cancer treatment and the need for personalized support and information for patients.
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this study by Dr. Shiyi Wang.
Key Highlights:
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DCIS is known as stage 0 breast cancer because it hasn’t spread outside of the breast ducts. However, there is not enough research to determine the conditions that increase the chances of DCIS evolving into IDC.
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Sentinel lymph node biopsy is not necessary for most DCIS patients as the risk of lymph node involvement is low.
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Personalized support and information are crucial for patients to make informed decisions about their treatment.
About our guest:
Erika Bell is the Director of Cancer Information and Education at Bay Area Cancer Connections (BACC), a community-based non-profit that supports people with breast or ovarian cancer. In this role she provides health education, personalized research, and medical decision-making support to clients. She has been with the organization for 14 years and is passionate about her work and the positive impact that it has on empowering people during a difficult time in their lives. She also serves as the Vice Chairperson for the California Breast Cancer Research Program Council. Erika earned an undergraduate degree in Biology from Cornell University and a doctorate degree in Molecular and Cellular Biology and Biochemistry from the University of California, San Francisco.
Key Moments:
At 13:43 “There are a lot of people where maintaining as much breast tissue as possible is the most important thing to them in addition to still having feeling in their breast, so they opt for a lumpectomy. Other people really have a strong urge to just get everything out, “I don't ever want to have to deal with this again, please remove everything.” Those people also tend to be thinking about double mastectomies, which in the case of DCIS and no inherited genetic predisposition to breast cancer or no strong family history really is not medically indicated, but there are still women who make that choice, either driven by their anxiety or future screenings or symmetry that they want to achieve, etc.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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In this episode, we embark on a profound exploration of death with the help of two remarkable individuals. Katie Coleman bravely shares her experience as a survivor of Stage IV liver cancer, a path fraught with uncertainty and a lack of available information. Julie McFadden is a hospice nurse whose daily encounters with death provide unique insights. She educates online audiences about various topics surrounding death. Join us as we unpack the mystery surrounding death: the process, the taboos, doctor and patient relationships, and more.
Key Highlights:
- The transition from fear to acceptance of death involves acknowledging and expressing those fears and getting educated about the dying process.
- End-of-life experiences can be peaceful and meaningful, providing comfort and solace to both patients and their loved ones.
- Honest conversations about the dying process are crucial for patients and their families. The fear of death can skew decision making, particularly in the context of terminal illness, but having the full picture can help patients better understand all of their options.
About our guests:
Julie McFadden, BSN, RN, has been a nurse for 15 years. Julie is an experienced ICU, and now hospice/palliative nurse. Julie has been passionate about normalizing death through education to the masses using social media. She has been featured in Newsweek, USA today, The Atlantic, and several other articles worldwide. Her TikTok has 1.4M followers, and you can find her on all social media platforms (Instagram, Facebook, and YouTube) at Hospice Nurse Julie. Julie’s new book is coming out in June: Nothing To Fear.
Katie Coleman is a patient advocate who was diagnosed with a rare stage IV kidney cancer in Dec 2020, at the age of 29. She has shared her diagnosis publicly on social media to spread awareness and to advocate for others with kidney cancer and rare diseases. Since being diagnosed, she has also founded a non-profit, started a podcast and is publishing an upcoming memoir, which you can preorder here. You can find her on social media here: TikTok, Instagram, Youtube and Twitter).
Key Moments:
At 09:34 “Not only am I now dealing with the crippling anxiety of death and dying, but now I'm also dealing with the crippling anxiety of letting people down by even saying and acknowledging those feelings…? But for me, it came from like, first I was terrified to look into anything. It just felt like I was doing something wrong by trying to investigate what it was like to die. But then once I got over that, where I personally found a lot of peace when I started hearing about near death experiences and end of life visions that Julie often talks about.”
At 22:02 “All I know is in watching people die a natural death, people need to know about this. People need to know about what it looks like and what happens to our bodies because it's not as scary as we think. And then when I think of my own mortality and I think about if I got diagnosed with something terminal tomorrow, I'm still human. I'm gonna have all the feelings, anger, sadness, scared. I'm still gonna be scared, but I also know that my body will take care of me. My body will take care of me. And I know that because I've witnessed it.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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In this episode, we interview mother and son Ashlee and Michael, hosts of the podcast “Michael and Mom Talk Cancer." They share their personal cancer experience and discuss topics such as managing work and finances, the impact of cancer on athleticism and identity, and the importance of maintaining positivity and mental health. They also touch on the concept of toxic positivity and how different individuals have different approaches to dealing with their illness, the challenges of comparing stories and outcomes, as well as the balance between quantity and quality of life. Michael and Ashlee share their experiences of living with the constant reminder of mortality and finding joy in the small things, while also emphasizing the importance of connection and offering practical tips for navigating the cancer experience.
Key Highlights:
- Having a strong support system is crucial for navigating the challenges of cancer as well as life, in general.
- Acceptance and adapting to new circumstances can help you thrive throughout your cancer experience, but it’s also okay to be upset and angry (you have every right to be).
- Maintaining a realistic outlook while embracing positivity is important when living with cancer.
About our guests:
Meet Michael Cramer, a 22-year-old cancer survivor and bone marrow transplant recipient, known for his social media influence. Born in Paris and raised in Miami, Michael's athletic background includes surfing, skating, and being part of the Olympic Development team for windsurfing.
Ashlee, also known as "mom," has a diverse background as a dancer turned early childhood educator turned cancer caregiver. In 2014, tragedy struck when her husband was diagnosed with Large B Cell Lymphoma. Ashlee became the sole provider for their three children while caring for her husband until his passing in 2016, which brought the family closer together. In July 2020, heartbreak struck again when Michael was diagnosed with an incredibly rare and aggressive cancer, Hepatosplenic T-cell lymphoma, with less than 200 documented cases ever. Despite the average survival being only 8 months, Ashlee quit her job to care for Michael full-time. After enduring chemotherapy, radiation, a bone marrow transplant, and various life-threatening complications, Michael miraculously survived. Throughout his journey, Ashlee never left his side, strengthening their unbreakable bond.
Turning their heartbreak into a story of "beauty in pain" and love, Michael and Ashlee started a podcast called "Michael and Mom Talk Cancer," along with a website, blog, and YouTube channel. While Michael is still in treatment for complications, he is alive and in remission. Together, Michael and Ashlee strive to fulfill their purpose of love and connection, inspiring not only the cancer community but anyone in need of motivation.
Key Moments:
0:00-11:36 Ashlee and Michael’s Story
11:37-19:50 Comparing and Contrasting Past Confrontations with Cancer
19:51-24:25 What Michael’s Remission Looks Like
24:26-32:24 Reality Checks, Radical Acceptance, Toxic Positivity, etc.
32:25-41:28 The Insight Brought on By Daily Reminders of Mortality
41:29-44:39 Ashlee and Michael’s Advice to All Our Listeners
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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In this episode, we talk with Dennis Watson and Cliff Reid, two entrepreneurs in the cancer space. They speak about the difference between genetics and genomics, and the role of genetic and genomic testing in clinical decision-making. They also touch on the history and impact of DNA sequencing and the challenges in applying genomics to cancer treatment. This conversation explores the development of Travera, a company advancing personalized cancer treatments. Dennis and Cliff share their hopes for the future of oncology, including the expansion of diagnostic tools and the increasing involvement of patients in their own care.
Key Highlights:
- The field of DNA sequencing has evolved over the years, but the application of genomics in cancer treatment still faces challenges in achieving widespread success.
- Sales and commercial teams play a crucial role in educating clinicians about new innovations in personalized oncology, and oftentimes scientific/product innovations take a while to actually become a part of a clinician’s practice.
- The future of personalized oncology involves the development of multiple techniques for selecting the right drug for the right patient at the right time, as well as increased patient involvement in their own care.
About our guests:
Dennis Watson joined Travera in July of 2022 as the Vice President of Business Development. He brings 15+ years of extensive sales and management experience in the oncology molecular diagnostic space. Dennis spent nearly 10 years with Agendia, beginning as a field-based sales professional, working his way up to gain experience in multiple facets of the business, receiving top-tier awards and recognition throughout his tenure. He served 4 years as a Regional Director in the Central US, before moving on to lead the US commercial sales organization in January of 2018. Prior to his work with Agendia, Dennis spent 5 years with the Oncology division of Myriad Genetics. Before Myriad Genetics, he also held positions in the pharmaceutical, industrial services, and web services industries.
Clifford Reid was the founding CEO of Travera. Previously, Dr. Reid was the founding Chairman, President, and Chief Executive Officer of Complete Genomics (NASDAQ: GNOM), a leading developer of whole human genome DNA sequencing technologies and services. Prior to Complete Genomics, he founded two enterprise software companies: Eloquent (NASDAQ: ELOQ), an internet video company, and Verity (NASDAQ: VRTY), an enterprise search engine company. Dr. Reid is on the Visiting Committee of the Biological Engineering Department at the Massachusetts Institute of Technology (MIT), a member of the MIT Corporation Development Committee, and an advisor to Warburg Pincus.
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Sit back, relax, and get ready to dive into the world of hypnotherapy! In this episode, Dr. Sonia Gupte will explore the intriguing realm of hypnotherapy and its potential impact on the mental and physical well-being of cancer patients. Join us as we debunk common misconceptions, shed light on the benefits, and delve into the current regulatory landscape surrounding this fascinating therapeutic approach.
Check out the mentioned research in Dr. Gupte’s book here.
Key Highlights:
- Cultural taboos towards mental health and how finding communities who struggle with similar problems can help with depression, anxiety, etc.
- Hypnotherapy’s capabilities for improving quality of life, including mental health, pain management, and sleep quality in cancer patients.
- The trials and tribulations of becoming a caregiver and potential research on hypnotherapy for caregivers.
About our guest:
With over 15 years of experience as a Family Medicine Physician in major healthcare facilities across India, Singapore, and Dubai, Dr. Gupte now focuses on treating patients through the power of the mind. For the past 9 years, she has utilized Clinical Hypnotherapy to tap into the "Human Subconscious Mind," effectively addressing physical and emotional conditions. Dr. Gupte is dedicated to integrating this modality into mainstream medicine and has authored the best-selling book "WITHIN," detailing her journey and successful patient case studies. She founded the Nonprofit Organization "Mind Medicine Movement" to promote mind-body healing and is particularly focused on helping cancer survivors improve their quality of life through hypnotherapeutic tools.
Key Moments:
At 5:30 "I truly felt that we are missing something huge in the medical field. We are not looking at a patient in the holistic way, which we should be."
At 26:52 "So hypnotherapy as a modality is very, it has very clear boundaries. It is not forever. You come with a goal. That goal is delivered through experiences which...are somewhere lost like a maze in your subconscious."
At 40:57 “The surprising thing is that when you research hypnosis and hypnotherapy, there is so much work which has already been done in the last few decades because we have been curious to bring this modality back into the medical field. Many successful researchers have done this and the focus has been pain management. The focus has been anxiety, depression. And when you specifically dive into hypnotherapy in oncology, starting from the diagnostic procedures to the treatment to the quality of life in survivors, there have been researchers established already showcasing the efficacy of the power of mind.“
At 51:53 “Caregiver burnout is real. Caregiver stress anxiety is very real. In India, we opened the doors for caregivers as well. We actually tried to convince them, “come with the survivor because you need equal care.” You know how we say on the airplane, put the mask first on your face and then on the next person? They happily agreed and they worked on themselves and they found so many things we are in denial of. Your sleep quality improves. Your joy to live life improves. Everything goes to the next level. And that is what they realized just in four days. So we are opening up this project for caregivers as well.”
Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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In this episode, Dr. Fumiko Chino shares her inspiring journey from art director to oncologist, driven by her experience as a caregiver. She highlights the gap between ideal and actual cancer care by discussing a breast cancer imaging study where some patients with Stage 2 and 3 disease received scans to monitor for cancer. Dr. Chino goes into why “surveillance“ scans may or may not be beneficial, and clinicians must communicate this to their patients. She then stresses the importance of personalized communication and understanding patients' unique experiences in order to build trust. Dr. Chino also touches on why prioritizing physicians' well-being to prevent burnout matters.
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this study by Caprice C. Greenberg, MD, MPH.
Key Highlights:
- There is a gap between intended care and actual care. The solution doesn’t have to be so grand either; we can start at small acts of kindness and accessibility.
- Communication with patients should be tailored to each individual, taking into account their unique experiences and perspectives.
- There is often no singular right answer in cancer treatment, and the best plan for a patient may vary depending on their circumstances.
- Doctors should also prioritize their own well-being to prevent burnout and thus be able to provide better care to their patients.
About our guest:
Fumiko Chino, MD is a cancer researcher, Assistant Attending in Radiation Oncology, and Lead of the Affordability Working Group at Memorial Sloan Kettering Cancer Center. She is also one of the Directors at the Costs of Care group, a NGO working to improve affordability in healthcare and the recipient of the inaugural 2022 ASCO Excellence in Equity Award. Her research is focused on financial toxicity, gaps in survivorship, health care disparities, and access; she has spoken across the US and internationally on equity and the costs of care.
Key Moments:
14:00 “I deliver care in the United States, one of, if not the wealthiest countries, certainly a country of privilege where we have every bell and whistle, and yet not everyone can access those bells and whistles. Not everyone has the capacity for receiving the highest quality of care. And even when I am able to offer the best, every bell and whistle delivered to the person and their capacity to receive it can be quite variable, right? Access, affordability, these are all like large barriers.You know, one of my most well-lauded studies is on parking costs, which is quite frankly like a really stupid thing to study. Like, why would parking be a barrier to anyone? It's parking. . But what's truly insulting is that people who actually can’t get the care that they really need in the facility that would probably serve them best because of a silly barrier like parking.”
53:31 “Just realizing that what is the right plan for this person is probably not the right plan for this other person, and understanding that coming to that conclusion together, trying to figure out again, sussing out, even if it's the small tailored things of like, ‘What can we do to make this easier for you?’ It's not one size fits all. It's really, or it shouldn't be, how about that?”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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In this episode, we welcome back a previous guest and friend, Katie Coleman. This time, we dive into facing one’s mortality and how to grapple with the uncertainty of living with a cancer diagnosis. We get into pre-diagnosis thoughts on mortality and how perspectives shifted after diagnosis. Katie also sheds light on some of the silver linings of being forced to confront your own mortality: helping you accept the inevitable, prioritizing what’s important, and guiding you to the road of self-discovery.You can listen to (or watch) the previous episode with Katie here.
Key Highlights:
- Initially a cancer diagnosis triggers fears and uncertainties about mortality, but acceptance of mortality leads to a rewarding change of perspective and even a fulfilling life.
- Encountering death transforms life by influencing priorities and perspectives.
- As a result of the shift in perspective, facing your own mortality may negatively impact bonds outside the cancer community. Feelings of isolation and not fitting in are common, particularly in situations dominated by small talk.
About our guest:
Katie Coleman is a patient advocate who was diagnosed with a rare stage IV kidney cancer in Dec 2020, at the age of 29. She has shared her diagnosis publicly on social media to spread awareness and to advocate for others with kidney cancer and rare diseases. Since being diagnosed, she has also founded a non-profit, started a podcast and is publishing an upcoming memoir. You can read more about Katie and sign up to be notified when her book launches on her website at www.katiekickscancer.com.
Key Moments:
2:52: " Through my diagnosis, I've had different prognosis' at different points of time. I'm very thankful for where I'm at currently, and I'm doing really well. But through that process and having to accept and think about my own mortality, some of my mindset around that shifted, which I'm sure we'll get into. My relationship with the thought of being given five years now is very different than it was when I was first diagnosed. But I had to do a lot of that learning on my own. And it's something that I wish more people talked about because it's a very, very hard topic to try to go through on your own and you can get very lost in despair and get yourself stuck in the process."
17:17: “If I could take back my cancer diagnosis, I wouldn't. Even if that means I only have two years of life left, I would not take it back still, because I have lived more in the last two and a half years than I lived in the entire 29 prior to that. And cancer really sucks. And I would probably regret saying that if I wasn't feeling well, I don't really know, but I do know that like where I'm at currently. It's just, it is life changing, but sometimes in all the best ways.”
49:25: “I noticed that I had a harder time listening to people gossip or hearing the everyday little nuances to life that happen… it's so hard to explain because I don't pass judgment on anybody in those situations. That is what life is. I think that's just how people live their life and I don't blame anyone for that. I just think that once you've gone through something like cancer that shifts your perspective, it's hard to sometimes sit in those situations because it feels negative or draining for me."
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Did you know that the majority of Americans with cancer are treated in community oncology practices and not at academic medical centers? Community oncologist Dr. Chris Terry joins us this week as we discuss local oncology care benefits and successes, and the importance of physical activity during cancer treatment. Dr. Terry also shares the way he communicates with new cancer patients in his practice to ensure that they fully understand their diagnosis from the very beginning. He also shares his hopes for the future of oncology.
Key Highlights:
- The pros and cons of local oncology care and academic-affiliated oncology care, as well as what Dr. Terry does to help alleviate the gaps of community care.
- The importance of physical activity (not only by physical means), but also on the emotional side of the cancer experience.
- Cancer 101: Dr. Terry’s usual protocol for consulting new cancer patients and his long term hopes for the future of oncology and healthcare.
About our guest:
Christopher Terry is originally from Pennsylvania, but recently set down roots in Rhode Island with his twin children, wife and two dogs. He is a values-driven physician leader who serves as the Medical Director of Hematology, Oncology and Infusion Services at Sturdy Health, a community-based healthcare organization in Attleboro, Massachusetts. Chris received his medical training in Philadelphia at Thomas Jefferson University and Rhode Island at Brown University. His expertise is in blood disorders and cancer, with a special interest in supportive care, as well as adolescent and young adult cancer. His love for sports led him to start an organization called Athletes Fighting Cancer, which improves the cancer experience through the power of sport by providing a team for support, exercise instruction and resources to strengthen the mind. Chris’ hobbies include soccer, golf, music and exploring new places. He enjoys spending time with friends and family, but especially loves being a dad.
Link to Dr. Terry’s patient orientation sheet, referenced in the podcast.
Key Moments:
9:26: “I was initially planning on doing academic medicine and then an opportunity came up for me to practice at a small community-based hospital and it kind of, no pun intended, but it hit home for me. It just felt like a good fit. In addition, I had amazing mentors that I had actually worked with during my training here already. It almost set that example of, you can get really good quality care close to home. You know, there are differences. We don't do clinical trials, but I think it's important for people to be able to get their care even at a local community hospital if it's possible. There is now a lot more collaboration between community-based hospitals and academic centers, even though we're not affiliated with one.”
27:04 “I think it's also important to set expectations. So you may not be able to perform at the level that you are used to, and that's okay. You may need to take more of a break than you're used to, and that's okay also... I also encourage people to listen to their body, find that balance, and understand that you can't always push your limits.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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You might be familiar with economics or the study of monetary scarcity, but have you heard of healthcare economics? In this episode, we explore the daily trade-offs inherent in healthcare with Dr. Jayadevappa, whose dedicated focus revolves around healthcare economics and racial disparities between African American and white Prostate Cancer patients. Dr. Jayadevappa offers a glimpse behind the scenes of healthcare decision-making and initiates a discussion on how to address the racial disparities prevalent among patients.
This episode was supported by the Patient-Centered Outcomes Research Institute (PCORI) and features this study by Dr. Jayadevappa.
Key Highlights:
- The three trade-offs in healthcare economics are: equity, efficiency, and quality of care.
- What are examples of overuse of low-value care? What are examples of underuse of high-value care?
- Racial disparities in healthcare, specifically in Prostate Cancer, between African American and white patients
- A current solution to disparities that healthcare researchers like Dr. Jayadevappa are looking into is shared decision-making through a preference assessment.
About our guest:
Dr. Ravishankar Jayadevappa, Ph.D., is an Associate Professor at the Perelman School of Medicine, University of Pennsylvania. He is also affiliated with the Abramson Cancer Center, the Leonard Davis Institute of Health Economics, and the Institute of Aging. Additionally, he holds a position as a Core Investigator at the Center for Health Equity Research and Policy at the Philadelphia VA Medical Center.
Dr. Jayadevappa's research aims to analyze the tradeoff between economic efficiency, equity, and quality, particularly in addressing health disparities based on race, ethnicity, income, and age. He has secured over $20 million in federal, non-federal, and industry-sponsored grants, leading numerous projects related to chronic diseases such as prostate cancer, bladder cancer, obesity, breast cancer, and Alzheimer's. With over 150 peer-reviewed papers and abstracts, Dr. Jayadevappa has made significant contributions to the oncology field and serves as an editor for several medical journals.
Key Moments:
At 3:18 “... healthcare is kind of complex and our resources are limited. So it's always like when you try to achieve one thing, excess more of equity, then you are trading off with efficiency. Or if you are looking at only quality of care, you are trading off with equity or efficiency.”
At 20:29 “...our hypothesis asked: is it true for African American patients, if they go to high volume physicians, is their quality of care naturally improved? But we found out that's not true… Then our next series of studies looked at the continuity of care. For instance, fragmented care, when they are in and out of the insurance plans or the healthcare providers. So that may be the reason…. And both recent papers concluded that lack of continuity of care was one of the driving forces of disparity in observed outcomes for African American patients."
Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing, or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their healthcare professionals for any such conditions.
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Ever experienced the frustration of feeling unheard, hastily ushered away, and checked off during your appointments? Or perhaps you've caught yourself making life-altering decisions hastily during your visits with your primary care provider? Join us in this episode as we unravel the systemic reasons behind these challenges and receive actionable tools to empower yourself, becoming an advocate for your health.
Key Highlights:
- We get a peek into a typical clinician’s workday and the structural issues within it.
- Three ways the healthcare system is fragmented: medical culture, loss to follow-up, and technology—and how they impact patients.
- The issues with finding primary care for cancer survivors and why post-cancer treatment is arguably the hardest part of the journey.
- What can you, as a patient, do to improve your visits?
About our guest:
Dr. Ilana Yurkiewicz is a physician at Stanford University and a leading figure in cancer survivorship and oncology-hematology transitions. With an M.D. from Harvard and a B.S. from Yale, she co-directs Stanford's Primary Care for Cancer Survivorship program, offering innovative primary care for cancer survivors and those at elevated genetic risk.
Her medical journalism, featured in outlets like Scientific American and STAT News, includes an acclaimed investigative piece on fragmented medical records. Her latest book, "Fragmented: A Doctor’s Quest to Piece Together American Health Care" delves deeper into medical challenges and was released in July 2023.
Check out “Fragmented” here: https://ilanayurkiewicz.com/book
Key Moments:
At 3:13: “It takes between 14 and 62 clicks to order a Tylenol, something that is a simple over-the-counter medication. And again, that paper showed that the confusion in the electronic medical charts caused errors in up to 30% of cases.”
At 26:56 “And why do doctors get such low amounts of time with patients? It's a payment model. It is still primarily in this country a fee for service payment model where doctors and healthcare organizations are reimbursed on a service. Now, what is a service? It can be a round of chemotherapy, a joint injection, or in primary care, a service is an office visit, that face-to-face, meaning nothing else counts as paid work. None of the time that you spend outside the room putting the pieces together of a patient's story counts as paid work.”
At 40:54
“We need time to make decisions, which is separate from time to manage symptoms and side effects and deal with other things, other concerns, and preventative health… That is what I try to do within my own practice. But we are limited by so many external barriers, many of which we have talked about in this podcast, and a main one here is the time again. We are limited by 10 to 15 minute appointments… How can you make these life altering decisions within 10 to 15 minutes, much less address everything else?”
At 46:05 “You cannot assume that your providers have all of your information or that they don't have it in a garbled way. They don't have it in a meaningful way. And then you are also the agent in making decisions about next steps that affect your health and your body. Your providers are invested in your health, but nobody is more invested than you and nobody knows you the best.
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Matthew Rosenblum, a geographer by training, shares his journey from PhD candidate to pancreatic cancer patient. He discusses the interplay of space, time, and identity, particularly in relation to his Jewish background and cancer diagnosis. Matthew shares his diagnosis and treatment experience candidly with his unique sense of humor. While addressing the realities of living with terminal cancer aren’t often funny, Matthew will keep you laughing during this episode that will educate and inspire.
Key Highlights:
- The intersections of identity, including being Jewish and BRCA2 positive.
- The importance of advocating for yourself with your care team.
- How the emotional and physical toll of living with terminal cancer can still bring moments of resilience and humor.
About our guest:
Matthew Rosenblum is a pancreatic cancer survivor and BRCA-2 previvor based in metro Detroit with his loving partner, Natalie, and their 6 year-old pug, Monique. Trained as an academic geographer at Florida State University and the University of Kentucky - and with 18 months of remission under his belt - Matthew has pivoted career trajectories to cancer advocacy. He is currently doing freelance writing in the nonprofit world while he looks for a more permanent position in the cancer space. As he searches for meaningful work, Matthew has been preparing a memoir covering his wild ride with metastatic pancreatic cancer.
Key Moments:
18 minutes: On intersecting identities. “I think it's like something my oncologist said to me very casually after they discovered the tumor on my pancreas and throughout my gut. He said, ‘Your sister has a BRCA2 mutation and your mom died? Yeah, you're Jewish?’ Yes, probably. I wasn't offended or anything like that. It's just there is a very clear connection historically between narratives of cancer and Jewish identity.
34 minutes: On advocating for himself. “I think it's a product of my personality, and I think it's also a way I've found to advocate for myself effectively, that sometimes doctors are not used to being spoken to in a certain way, and if you are willing to get up in their grill a little bit, oftentimes you can get what you want, or you can come to some kind of understanding. My oncologist is the Chief of Oncology at a major cancer research institute – he's the boss. And sometimes that colors people's judgment. So sometimes if you shake them a little bit, you might not steer the ship, but you can be involved in the direction, right? You're controlling the trajectory as a partner, at least.”
50 minutes: Finding humor in dark moments. “I got an automatic notification with the rest of my results on the MyChart app and it used the word adenocarcinoma. And I didn't know that word. But I knew enough that I knew it wasn't good because cancer words, they all sound like they could be the bad guy in Star Wars, right? Like sarcoma. Honestly, are the people who write Star Wars, are they just stealing cancer words? Who's to say? In any case, I flipped out because I Google adenocarcinoma, and it's not good.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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We welcome back one of our previous guests, David Moriah! Embark on a profound journey into David's relationship with religion and faith, specifically uncovering how his unwavering faith became a guiding light through his cancer experience. The radiant blend of optimism and vulnerability in this episode offers invaluable lessons for us all. Don't miss out—tune in and be inspired by David's compelling story. See our previous episode with David here.
Key Highlights:
- Explore David's profound relationship with faith and how even in the face of cancer, he is certain that The Creator is looking out for him through “God Winks”
- Advice on paying attention to intuitive feelings, especially when something feels off, and the importance of getting a diagnosis sooner rather than later
- David's unique approach to faith and what he’d like to be remembered for are discussed, providing insight into the values that keep him upright in his journey
About our guest:
David Moriah has lived 72 abundantly blessed years and is fiercely determined to extend the streak in the face of a “stage 4, incurable” diagnosis. He is a husband of 48 years, a father of two and a grandfather of two and a half. That’s more important than what he’s done for a living. As for that, he spent his 20s as a wilderness instructor for Outward Bound and is the founding director of Cornell University’s outdoor education program. He hosts a blog at CaringBridge, “Adventures in ChemoLand”, and he is a passionate advocate for staying fit while undergoing treatment, and looking out for “God Winks”, those moments of joy and reassurance that we are not alone in this sometimes scary and foreboding journey.
Key Moments:
18 minutes: On finding peace in the future. “But whatever it is, whatever that afterlife is, I have a peace and assurance that I'm gonna be okay, that The Creator’s gonna take care of me. I don't know what it's gonna look like, but I am so at peace about this. And there's a line in the Christian Bible that talks about the peace that passes all understanding.”
30 minutes: On listening to your gut. “I want to urge everyone to take the extra step, make sure you're checking out your symptoms. Don't poo it… No, no, treat yourself right.”
48 minutes: On finding purpose. “My main purpose right now that I'm feeling is telling my story, for those who want to hear it. To tell my story and hopefully help people in their journeys. And then the other is just to take advantage of every moment, every day. Every opportunity to be with my kids and grandkids and just to go out and enjoy that beautiful sunset that The Creator gave me.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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In this episode, Dr. Supriya Mohile discusses the need for geriatric oncology and the underrepresentation of older adults in clinical trials. She highlights the challenges of decision-making in oncology and the discrepancy between guidelines and patient goals. She also discusses the significance of patient-reported outcomes in treatment decisions. Finally, Dr. Mohile explores the role of social networks in supporting patients during the decision-making process, cancer prevention strategies and the acceptance of the unknown.
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this study by Dr. Mohile.
Key Highlights:
- There are an increasing number of older adults with cancer, yet older adults are often underrepresented in clinical trials.
- Social networks play a significant role in decision-making, and it is important to consider the influence of family and friends on patients' choices.
- Patient input is valuable in developing interventions and improving care delivery.
About our guest:
Dr. Supriya Gupta Mohile, a distinguished figure in the field of geriatric oncology, is a Professor of Medicine and Surgery at the James Wilmot Cancer Institute, University of Rochester. Her research focuses on assessing patterns of care, health outcomes, and quality of life in older patients undergoing systemic cancer treatment. With nearly 300 publications in geriatric oncology, she serves as the Editor-in-Chief of the Journal of Geriatric Oncology and chairs the ASCO Geriatric Oncology Clinical Guideline panel. You can find her research in the following journals: Lancet, Journal of Clinical Oncology, and JAMA Oncology. In addition to her research focus, Dr. Mohile works closely with such patients in the Cancer and Aging Research Group, providing administrative support to a community of older adults with cancer and their caregivers.
Key Moments:
10 minutes: On the challenge of treating older cancer patients using clinical trial data. “But the problem is, we're getting clinical trial data in very fit patients, either younger or even older patients who are very healthy. And then we don't know when we have the drugs come on market, what is the safety and efficacy for the patient that's sitting in front of me in the clinic who has a disability, has heart disease, has real insufficiency, lives alone, is having trouble taking their medicines, and may not be as fit as the people that are in the trials.”
40 minutes: On the way people often make decisions based on anecdotal evidence from their friends and not science. “Even my mother does this too, for example, about knee injections. She said ‘All my friends told me not to do this one. They told me to do that one instead.’ I'm like, ‘mom, I'm a physician. This doesn't matter. This is what the data shows. I appreciate that this bad thing happened to your friend, but it's not necessarily going to happen to you.’ But people will use anecdotal information to drive decisions more than evidence.”
50 minutes: Despite preventative measures, people still get cancer. “ So when patients come to me and say ‘why me’? They want to know why. I can say sometimes we just don't know why and it's not up to us. Something happens, the universe exists. So we have to move forward and help with what we can help.”
Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Dr. Simmons and Dr. Sepucha are back for Part 2 of their episode to talk about colorectal cancer screening, and in particular, the importance of individualized decision-making for patients aged 76 to 85. The conversation highlights the challenges faced by clinicians in initiating discussions about continuing or stopping screening, and the importance of patient preferences and goals in guiding these decisions.
Key Highlights:
- The importance of individualized decision-making for colorectal cancer screening in people aged 76 to 85.
- How clinician training prompted an increase in conversations about preferences and options for colorectal cancer screening.
- “Can we talk about my options?” or “Here are my goals” as phrases to encourage collaboration between doctor and patient.
About our guests:
Dr. Karen Sepucha is the director of the Health Decision Sciences Center in the Division of General Internal Medicine at Massachusetts General Hospital (MGH) and an associate professor in Medicine at Harvard Medical School. Her research is focused on helping patients and families become meaningfully involved in significant medical decisions. Dr. Sepucha oversees efforts to promote shared decision making in primary and specialty care at MGH and across MassGeneral Brigham Health Care.
Dr. Leigh Simmons is the Medical Director of the MGH Health Decision Sciences Center where she studies the use of decision aids to help patients and clinicians in the shared decision making process. Dr. Simmons develops and conducts training of physicians and staff in communication skills focused on improving decision making with patients. Her clinical practice is with the Internal Medicine Associates at Massachusetts General Hospital. In addition to her clinical and research interests, Dr. Simmons is a medical student educator and directs the internal medicine clerkship for Harvard Medical School students at Massachusetts General Hospital.
Key Moments:
5 minutes: On shared decision-making for colorectal cancer screening in older adults. “The areas that we really think are perfect for shared decision-making are ones where there are real choices. So you can have a colonoscopy, you can have a stool-based test, or you might do neither. I think those are the options that are really on the table for patients in this age group, 76 to 85. So there's not one right answer. It depends on their overall health status, their risk of colon cancer, whether they’ve had polyps in the past, have they had clear colonoscopies. It also depends on what's most important to them.”
25 minutes: On how screening shifted modalities due to shared decision-making conversations. “We thought they were going to decrease by giving patients options, but we increased screening rates, but that increase was due to more people doing stool testing.”
32 minutes: On tactics to increase collaboration between patients and their healthcare providers. “In decision science, there's two camps. There's the option camp, which is to start with what you can do. And then there's the value camp, which is to start with what you want.”
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features 2 studies (Study 1 & Study 2) by Dr. Sepucha & Dr. Simmons.
Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Alexandra Drane, serial entrepreneur and co-founder of ARCHANGELS, discusses her unconventional experience working as a cashier at Walmart and its importance in informing her approach to business and life: solving complex problems by starting with the community and addressing real-life issues. Alexandra delves into “the unmentionables” of healthcare: the idea that when life goes wrong, health goes wrong. She emphasizes the importance of small acts of care and attention as the foundation for meaningful change in healthcare and society.
Key Highlights:
- How working as a cashier at Walmart gave Alexandra a new lens for seeing the strength of the people who make up a community.
- How to help change a healthcare system that isn’t set up to treat patients or healthcare providers as whole humans.
- The power of focusing on the details of life to create meaning.
About our guest:
Alexandra is co-founder and CEO of ARCHANGELS. She co-founded Eliza Corporation (acquired by HMS Holdings Corp: HMSY), Engage with Grace, and three other companies (all boot-strapped). A serial entrepreneur, she is also a cashier-on-leave for Walmart. She believes communities are the frontline of health, that caregivers are our country’s greatest asset, and that we need to expand the definition of health to include life. Alexandra is an inventor on numerous patents and has co-authored multiple peer-reviewed journal articles, including publications with the CDC, the Journal of Affective Disorders, and NEJM Catalyst. She joined Prudential Financial as a Wellness Expert for a film series called “The State of US” that was turned into a national ad campaign and generated close to two billion impressions. She has one hobby outside of her passion for revolutionizing health care, and her love of family and adventure…car racing.
Key Moments:
11 minutes: On tapping into the expertise of patients. “Patients, humans who are in these situations where the traditional healthcare system is not offering a solution, they become genius inventors. And you can look condition by condition, whether it be childhood diabetes to life-threatening allergies to every type of cancer. There will be someone who has, in their basement, in their church, in their YMCA, rigged something together that is solving a previously misunderstood problem. And they figured it out. There is genius everywhere.”
25 minutes: On the challenge of the current structure of the healthcare system. “You had said something earlier about how sometimes we're dismissed. And I was thinking, as you were talking, about just how difficult it is to be a patient, to be a human in the system, when the system's not equipped to really think about you as a human.”
40 minutes: On the power of intention. “I think the healthcare system, which let's be clear, the healthcare system is nothing other than the fabric of society. The healthcare system is our lives. How we care for each other and get cared for ourselves is not a system, it is humanity. And I think we need to go back to what matters, who are we, how do we show up for each other? How do we lead with love? And guess what? When you do that, you can be sustainable and scalable.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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In this episode we delve into the world of healthcare decision making. Dr. Simmons and Dr. Sepucha, who collaborated on a study funded by the Patient Centered Outcomes Research Institute, discuss the importance of shared decision-making and its impact on patient care. Collaboration between patients and their care teams empowers patients to actively participate in their treatment plans, factoring their values and goals. Samira also shares her personal decision making struggle during her breast cancer treatment.
Key Highlights:
- Why making a decision about treatment should be a collaboration between the patient and their care team.
- How decision aids and coaching can help patients feel prepared to more actively participate in decision making.
- How to ensure that a patient’s expert opinion is integrated into treatment plans.
About our guests:
Dr. Karen Sepucha is the director of the Health Decision Sciences Center in the Division of General Internal Medicine at Massachusetts General Hospital (MGH) and an associate professor in Medicine at Harvard Medical School. Her research is focused on helping patients and families become meaningfully involved in significant medical decisions. Dr. Sepucha oversees efforts to promote shared decision making in primary and specialty care at MGH and across MassGeneral Brigham Health Care.
Dr. Leigh Simmons is the Medical Director of the MGH Health Decision Sciences Center where she studies the use of decision aids to help patients and clinicians in the shared decision making process. Dr. Simmons develops and conducts training of physicians and staff in communication skills focused on improving decision making with patients. Her clinical practice is with the Internal Medicine Associates at Massachusetts General Hospital. In addition to her clinical and research interests, Dr. Simmons is a medical student educator and directs the internal medicine clerkship for Harvard Medical School students at Massachusetts General Hospital.
Key Moments:
10 minutes: On the power of shared decision-making. “We really see this shared decision making, it's a process, right? And ideally it's a process that really fosters good communication and also sort of built on the foundation recognizing the expertise that different parties bring to the table.”
25 minutes: On the value of decision aids in elevating conversations. “While we would never make the case that it's going to save time to use a decision aid, the goal is that it would be fairly time neutral if introduced properly, if it's done as pre-work for a visit, getting this to patients at the right time, when they're facing a decision and getting them to watch it and review it.”
41 minutes: On the importance of the patient perspective. “Care usually only gets better if we invite the people who are living with the condition every day to contribute the thoughts they have been having about their disease.”
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features 2 studies (Study 1 & Study 2) by Dr. Sepucha & Dr. Simmons.
Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Dr. Karen Wernli, Senior Scientific Investigator at Kaiser Permanente Washington Health Research Institute, delves into the intersection of epidemiology and personalized medicine, exploring the challenges of balancing population-level research with individualized healthcare needs. She discusses survivorship in breast cancer with a comparison of mammograms vs. MRIs for surveillance imaging. Dr. Wernli talks about some of the challenges patients face throughout the breast cancer diagnosis and treatment process, emphasizing the importance of including the patient voice in research to capture those lived experiences.
Key Highlights:
- The study of population health (epidemiology) versus individual health.
- Comparing Mammograms and MRIs for breast cancer surveillance.
- Examining the need for a more patient-centered approach to healthcare.
About our guest:
Karen Wernli, PhD, is a Senior Scientific Investigator at Kaiser Permanente Washington Health Research Institute and Professor in the Department of Health System Science at Kaiser Permanente Bernard J. Tyson School of Medicine. She is a cancer epidemiologist and health services researcher whose work focuses on incorporating patient-centered outcomes to improve health care along the cancer care continuum, from prevention to survivorship. Her work spans several types of cancer (including breast and lung), and explores the impact of cancer in special populations (adolescents and young adults with cancer). Her research strives to answer critical questions at the confluence of patients’ needs and clinical priorities.
Key Moments:
18 minutes: On the importance of reporting data for subgroups even if it is a small number. “If you only had 5 people in a subgroup, doing complex math about relationships is impossible. But at least I can describe what's going on. At least you could see what's the distribution of the exposure, the outcome of something I'm studying? So that we start to understand what's going on in this population when we don't have any other data."
52 minutes: Looking at surveillance using Mammogram vs. MRI. “Our study found that using breast MRI resulted in twice as many biopsies. What that means is if you did it on a population level, there would be thousands, like tens of thousands of additional women having a breast biopsy. And that if you waited another six months, the mammogram likely would have caught the cancer and maybe would not have changed the course of what was actually happening.”
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Karen Wernli, PhD.
Research reported in this podcast was supported by the Patient Centered Outcomes Research Institute under Award Number CE-1304-6656. The perspective shared is solely the responsibility of Dr. Wernli and does not necessarily represent the official views of the Patient Centered Outcomes Research Institute or Kaiser Permanente.
Limitations: Please note the investigators suggest that the multivariate analysis could not adjust for all population characteristics in this observational study. This means that the interpretation of the results from the study is complex. Since we are a podcast that does not provide medical advice, please discuss with your clinician which imaging is recommended for you.
Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals.
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Molly MacDonald was diagnosed with breast cancer 18 years ago, 3 years into her marriage with her husband Tom Pettit and founded Pink Fund out of her experience. This year Tom was diagnosed with tonsil cancer, and Molly has become the caregiver. This episode takes a look at the couple’s role reversal, how family relationships shift after a cancer diagnosis and the wake-up call you receive when you are facing your own mortality or that of your loved one. Molly and Tom are equal parts insightful and hilarious in sharing their experience as both patients and caregivers, and how Molly has shifted from the “Patient from Hell” to the “Caregiver from Hell.”
Key Highlights:
- How family dynamics and perspectives change after a cancer diagnosis.
- As a caregiver, recognizing that patients need to make the ultimate decision about their treatment and goals.
- The ripple effect that our choices have in creating a future we never expected.
About our guests:
Molly MacDonald is co-founder and CEO of Pink Fund, a nonprofit that provides three to six months of financial support for women and families in active breast cancer treatment. Pink Fund was born 17 years ago out of MacDonald’s own experience as a mother of 5 struggling to make ends meet during her breast cancer diagnosis. Prior to founding Pink Fund, MacDonald had an extensive career in journalism, public relations, marketing, and sales. She is a frequent columnist and contributing writer for health journals publications.
Tom Pettit is a professional piano technician by trade, with 40 years of experience on the concert stage providing and tuning pianos for renowned performing artists. He spent 25 years with The Detroit Symphony Orchestra. His fine auditory skills have made him in high demand for some of the world’s most acclaimed pianists. He is co-founder of Pink Fund and serves in the role of Comptroller working with Pink Fund’s accountant, auditors, and lawyer.
Key Moments:
25 minutes: On keeping the patient at the center of decisions as a caregiver. “I know it’s hard for the caregiver, but I think the patient needs to be in charge. When I had my breast cancer and was told I had two options, a full mastectomy and no radiation or a lumpectomy and radiation. And I asked my surgeon, ‘If it were you, what would you do?’ And she said, ‘The thing is, it’s not me. And I can’t be responsible for your choice.’ So it is not me, and I really cannot thrust something on Tom because I don’t want to be responsible for the outcome of his decision.”
45 minutes: On how Molly’s choice for cancer treatment created a movement. “Sometimes I wonder, even though the biopsy came back that it was showing cancer, even though it was Stage 0 and hadn’t formed a tumor. Sometimes I wonder if I’d elected to do nothing, if nothing would have happened. But if nothing would have happened, and I’d elected that, then there would be no Pink Fund. Because we wouldn’t have gone through this experience together where we experienced financial toxicity, and where I met other working women who were going to stop treatment and go back to work because their treatment was going to outlast their FMLA, and they couldn’t afford to lose their jobs.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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In this episode, we talk with Dr. Glyn Elwyn and Danielle Schubbe about the ethical imperative of including patients in the decision-making process. They discuss how patient goals inform treatment decisions and the challenge of making choices for a “future self” with the lived experiences and preferences of today. Glyn and Danielle talk about this process for early stage breast cancer and some of the tools they’ve created to help both clinicians and patients navigate shared decision-making, including the three-talk model.
Key Highlights:
- The art of combining clinical guidelines and patient preference to make the best treatment decision.
- The role of patient goals in making decisions and realizing that decisions are being made for a “future self” using “current self” experiences.
- Exploring the three-talk model of decision making: team talk, option talk and decision talk.
About our guests:
Glyn Elwyn BA MD MSc PhD FRCGP is a clinician, researcher, and innovator. He is a tenured professor at The Dartmouth Institute for Health Policy and Clinical Practice, USA, and at the Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Center, Netherlands. He has Visiting Professor positions at University College London, UK, and at the University of Lausanne in Switzerland. After reading the humanities he qualified in medicine, completed a Masters in Education, and obtained his doctorate at Radboud University, Nijmegen, Netherlands, with Professor Richard Grol. Glyn Elwyn studies coproduction, shared decision making, and the application of machine learning to digital recordings of clinical encounters.
Danielle Schubbe joined the Coproduction Laboratory in September 2017. She is an external PhD student of Health Services Research at Radboudumc in Nijmegen, Netherlands. She has worked on multiple PCORI-funded studies about shared decision making and the implementation of shared decision making in diverse clinical contexts.
Key Moments:
19 minutes: On integrating patient preference with clinical guidelines. “I think most discerning clinicians understand how to work within guidelines, and I think most expert clinicians would say I bring in patient preference as well as know what the rules are saying or what the guidelines are saying.”
31 minutes: On the challenge of making a decision for your future self. “Your decision today about that future is gonna be misinformed because you've never experienced that future yourself.... We cannot predict you in three years’ time. How will you feel? We can only ask you to do your best to predict how you feel in the future… and you will be wrong.”
49 minutes: Using the three-talk method of decision making. “Then there's the option talk. That's when you present if there is more than one option for the patient to consider for their treatment. That's when you go over all the nitty gritty of the pros and cons of the two surgical treatment options, in our case for early stage breast cancer, in a way that is hopefully not really overwhelming for the patient.”
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features these PCORI studies by Dr. Glyn Elwyn & Danielle Schubbe - Study 1 and Study 2.
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Dr. David Penson, Chair of the Department of Urology at Vanderbilt University, discusses his comparative effectiveness research in prostate cancer. In the second of our two-part prostate cancer series, we delve deeper into the world of prostate cancer treatment decision-making. Dr. Penson discusses the emotional and informational hurdles that patients face, as well as the importance of patient education, understanding patient preferences, and the ongoing battle against overtreatment in prostate cancer.
Key Highlights:
- Importance of informed decision making and arming patients with accurate and reliable information.
- Understanding the concept of patient preferences in treatment decision making.
- Overcoming decision biases and how the emotion of a cancer diagnosis can outweigh a rational decision-making process.
About our guest:
David F. Penson, MD, MPH is the Hamilton and Howd Chair in Urologic Oncology, Director of the Center for Surgical Quality and Outcomes Research and Professor and Chair, Department of Urology at Vanderbilt University. He currently maintains a clinical practice in urologic oncology at the Vanderbilt-Ingram Cancer Center. While his general research focus is clinical epidemiology and health services research across all urologic disease, his specific interests include the comparative effectiveness of treatment options in localized prostate cancer and the impact of the disease and its treatment on patients’ quality of life.
Key Moments:
4 minutes: On the clinical shift to active surveillance. “We have this situation where we were over diagnosing. Half the men who were detected by PSA screening at the turn of the century were overdiagnosed, depending on how you defined overdiagnosis. And they were all getting treated. So you had this terrible problem where we were just kind of treating everybody. I think what we've learned is that, in fact, not everyone with prostate cancer needs to be treated. That PSA picks up a lot of clinically indolent prostate cancer.”
24 minutes: On determining a patient’s priorities: “The cancer control and cure piece is not quite as clear [with radiation] because you're not pulling the cancer out. So you don't have the psychological benefit of knowing what you're dealing with. And it's very hard to do surgery after radiation. So it becomes this set of options, a set of what's important to you, right? So patients may not walk in the door saying, ‘I have a preference set.’ But as you start talking to them, their preference set becomes relatively clear. And when I talk to them, I say, ‘Listen, I can tell you what I would do,’ because a lot of times they say, ‘Doc, what would you do?’ But the problem is, I can't take Dave out of Dr. Penson, right? So I have my own set of preferences.”
36 minutes: On emotional vs. rational decision making. “But I think it's very hard to sort of turn down the emotional volume because the word ‘cancer’, any human hears that, and it scares you. Right? That goes back to what we were saying before about maybe we shouldn't be calling Gleason 6 cancer, cancer. Because there's a charge that goes with that word that freaks people out.”
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Dr. Penson.
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Wills Levy was only five years old when he donated bone marrow to his one year old brother, Andrew. On this episode, Wills and his mom Esther talk about Andrew’s cancer experience and the impact on their family, how Wills’ cells gave the family extra time with Andrew to create memories, and how Andrew continues to guide the way they live, even after his death in 2016. This beautiful conversation highlights the power of a mother’s intuition, and a brother’s mission to squeeze every opportunity out of life knowing that time is never guaranteed.
Note to listeners: This podcast was recorded the day before the devastating wildfires in Lahaina where the Levys reside and therefore does not reference the grief and trauma experienced by Wills’ classmates and the entire Maui community. Our hearts are with the Levys and their Maui family.
Key Highlights:
- The power of the time Wills’ bone marrow donation gave the family to create memories with Andrew.
- How Esther’s maternal intuition ended the arduous path to a cancer diagnosis for Andrew.
- Andrew’s legacy of joy in guiding the family to live without regrets and take advantage of every opportunity presented to them.
About our guests:
Esther Levy is a mom of four children between the ages of 6 and 14 years old – three on earth and one who resides in her heart. In 2014 her life turned upside down when her third child Andrew was diagnosed with AMKL (Leukemia) at the age of 14 months. She left her career in pediatric nutrition and as a wellness coach to be by Andrew’s side and to care for her family. She is passionate about her family, fitness, and nutrition. Esther and her husband helped start a music therapy program for hospitalized children at Lucile Packard Children’s Hospital Stanford, and she is in the process of writing a book. She recently launched an online community entitled, “The Lost Sibling Project” to help empower bereaved siblings to process their grief. She earned a bachelor of arts degree in Human Biology from Stanford and a MSc with distinction in Public Health and Nutrition from the University of Westminster in London. She currently lives with her family in Maui.
Wills Levy is a freshman at Seabury Hall in Maui where he serves as the freshmen class president and spends every extra minute outside school playing soccer, traveling (to play soccer), and cooking/eating spicy food. For the last 4+ years he's served on the junior board of the Children's Cancer Therapy Development Institute - a cause he has passionately supported since he donated his bone marrow to his brother Andrew. His younger sisters awarded him the "world's best big brother" trophy. His parents agree.
Key Moments:
8 minutes: Wills on extra time with Andrew after donating his bone marrow. “Some of the most important and meaningful moments of my life with Andrew happened during that time. So it felt very good to do the bone marrow transplant and start that period of time.”
15 minutes: Esther on a mother’s intuition. “I think through this process, most or all big decisions were perfectly clear to me in an instant. Which was, it almost feels like, a superpower. But any big medical decision from there on, I knew what my answer was immediately.”
59 minutes: What Andrew continues to teach the family about living life. “I do not look back with regrets at all. Everything that we experienced with Andrew, I don't look back at the what ifs and the regrets because it's just what happened, and it's the way life was. We did the best that we could, and we're proud of the life that we gave Andrew.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment & is at the user's own risk.
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Dr. David Penson, Chair of the Department of Urology at Vanderbilt University, discusses his comparative effectiveness research in prostate cancer. He talks about the evolution of Prostate Cancer awareness in the US, and historic screening and side effect issues that have made it a stigmatized topic for many men. Dr. Penson describes the nuances of PSA testing and how higher diagnosis rates of Prostate Cancer has led to overtreatment in the past, and the current shift to focus on active surveillance is helping to better balance the treatment paradigm for men with Prostate Cancer.
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Key Highlights:
- What is comparative effectiveness research and why does it matter to cancer patients?
- The evolution of the stigma associated with Prostate Cancer.
- How to think about the nuances of PSA screening tests.
About our guest:
David F. Penson, MD, MPH is the Hamilton and Howd Chair in Urologic Oncology, Director of the Center for Surgical Quality and Outcomes Research and Professor and Chair, Department of Urology at Vanderbilt University. He currently maintains a clinical practice in urologic oncology at the Vanderbilt-Ingram Cancer Center. While his general research focus is clinical epidemiology and health services research across all urologic disease, his specific interests include the comparative effectiveness of treatment options in localized prostate cancer and the impact of the disease and its treatment on patients’ quality of life.
Key Moments:
6 minutes: What is CER and why does it matter? “Comparative effectiveness research has been around forever. People have different names for it, but it's comparing the effectiveness of various interventions for a condition. I've been focused in prostate cancer, so a lot of what I'm focused on is comparing the effectiveness of surgery and radiation and, for that matter, active surveillance in outcomes in prostate cancer.”
21 minutes: How cultural differences impact stigma. “In the US, prostate cancer is much more common in Black men. And the way they respond to the diagnosis may be different than other cultural groups. Hispanic men have another way of looking at it, white men, etc. So you do have this cultural element to it too, because sexuality and body image is often tied to cultural norms.”
31 minutes: The nuances of PSA screening. “The American Urological Association just came out with new recommendations around screening and does say, discuss screening, but doesn't say everyone should be screened. They've sort of started talking about getting a PSA test in your mid-40s, because there's pretty good literature that a baseline PSA test will establish your pretest probability of clinically significant prostate cancer in your lifetime. But the other thing that they mentioned is they basically say we should probably not be doing annual screening with PSA testing, probably every other year. Because less may be more here.”
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Dr. Penson.
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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The latest episode of "The Patient from Hell" features a conversation with David Moriah, a “Stage IV” cancer patient and outdoor enthusiast, who talks about living a life of adventure. David shares about his early days as an Outward Bound instructor, his contributions to the Cornell University Outdoor Education Program and the life lessons he has learned from “sleeping in the mud and swatting mosquitoes.” He talks about how mindset and faith have helped him through his cancer experience, which he refers to as “fighting the blue meanies.”
Key Highlights:
- How outdoor adventures have shaped David’s view on leadership and life.
- Recognizing the value of all roles in a group and how the sum of the parts contributes to the success of the whole.
- The power that comes from an insecure future in fueling an adventurous spirit.
About our guest:
David Moriah has lived 72 abundantly blessed years and is fiercely determined to extend the streak in the face of a “stage 4, incurable” diagnosis. He is a husband of 48 years, a father of two and a grandfather of two and a half. That’s more important than what he’s done for a living. As for that, he spent his 20s as a wilderness instructor for Outward Bound and is the founding director of Cornell University’s outdoor education program. He hosts a blog at CaringBridge, “Adventures in ChemoLand”, and he is a passionate advocate for staying fit while undergoing treatment, and looking out for “God Winks”, those moments of joy and reassurance that we are not alone in this sometimes scary and foreboding journey.
Key Moments:
5 minutes: On the leadership lesson he learned on his outdoor adventure. “I knew that what I needed to do was hop from rock to rock to get across the river. And so I proceeded to dance across the rocks, attempting to impress my charges with how athletic I was. And immediately, my team started falling off the rocks into the stream, left and right. I was standing on the other shore watching this and it's a leadership lesson that I never forgot. My job is not to look good and impress people. What I need to do is equip and empower my people to be able to do it themselves.”
29 minutes: On the idea of competition vs. team work. “There is an element in advanced mountaineering when you're in the Himalayas and you're climbing Everest or K2 where not everybody summits. Not everybody summits, but you want everybody to succeed. The success of the expedition goes across the entire team. But if you think of it as everyone succeeds rather than everyone summits, the idea is not that we come back and somebody won and everybody else lost, but that everybody achieved to the best of their ability."
43 minutes: Quote from Into the Wild and how it resonated with David. “ I'll key in on one section that I highlighted, which is ‘in reality, nothing is more dangerous to the adventurous spirit within a person than a secure future.’ Whoa, and I realized, I have an insecure future. And my diagnosis is very serious. It's a stage four. I will say that. So my future is insecure. For me, when I realized I was in this insecure future, and it didn't take long for me to come to the conclusion that this is a new adventure. This is something that I can learn from, I can grow from, I can get closer to my creator.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Samira’s mom, Monika Daswani, joins the podcast to discuss her experience navigating Samira's cancer diagnosis and treatment as her caregiver. Monika, a trained chef by profession, shares her perspective on caring for her daughter during her cancer treatment including the challenges of maintaining nutrition during treatment, adapting meals to symptoms, and the importance of a strong support network. Monika emphasizes the role of faith, spirituality, and intent in both caregiving and healing. She also discusses her work leading the Helping Hands Foundation, which supports cancer patients in India.
Key Highlights:
- The role of family caregivers during cancer treatment
- How faith, intent and spirituality guided Monika’s caregiving
- Navigating nutrition during cancer treatments
About our guest:
Monika Daswani is the CEO and a member of Helping Hands's Board of Directors. With her leadership, Helping Hands pivoted from a general non-profit to embrace the mission to spread awareness about cancer diagnosis, early detection, and support other patients and caregivers. She was the primary caregiver to her daughter, who was diagnosed with cancer. A self-taught chef, Monika Daswani has dedicated her life to the gourmet food catering industry. She is the Founder and CEO of Kitchen Stories, a food catering company that has provided Kolkata, and numerous cities in India, access to global cuisine for over 2 decades.
Key Moments:
7 minutes: It takes a village - “The whole wanted to be there with and for Samira. We are a small family of five, and each of us contributed in our own way for her. I was looking after Samira's food. My husband, who is very good at doing research, was helping me with handling symptoms with the correct food and home remedies. Raghav was Samira's emotional support. My other son Rohan, because he also lives in San Francisco, knew the healthcare system and could negotiate and set up appointments and get reports.”
10 minutes: On how faith has played a part in her caregiving journey - “I essentially work on faith. And I have enough faith, as I tell my family, for my entire family. Because I know I'm not alone, and I know the universe is there for me, and I think the universe is actually there for everyone. It's just up to us to realize him and absorb that energy from him. And as a caregiver, I think that is what I did because there is only so much that you can do as a human being. There is so much more that you require to be able to successfully survive this journey because at every point, it's trying to bring you down.”
12 minutes: On nutrition during cancer treatments - “Feeding her during chemo was all about focusing on how much nutrition and energy can be absorbed from what you are taking in because a body needs it all. The body is battling all those poisons that are going in. All the good cells, bad cells, everything is getting killed. We need the body to fight back. Because I come from India, when we cook, we believe that it's your thoughts and it's your vibrations that get transmitted in the food that you cook. It's your intent. And that's what I would focus on.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Our guest this week is a scientist, an author and a father living with cancer, Jeff Stewart, who talks about the uncertainty of time. He delves into the complexities of calculating risk, understanding the abundance of sometimes ambiguous data and partnering with your oncologist or health care provider to help navigate uncertainty. Jeff addresses misinformation and biases in the US healthcare system, emphasizing the importance of evidence-based resources and treatments. Jeff also discusses some of the insights presented in his book, “Living: Inspiration from a Father with Cancer”.
Key Highlights:
- The balance of living life as if you have might have months to live or you might have many years to live.
- The power and limitations of data and how systemic biases influence the way people interpret information.
- Life insights from Jeff’s book, “Living: Inspiration from a Father with Cancer”.
About our guest:
Jeff Stewart is a managing director at Syneos Health, scientist, inventor, award-winning playwright, and father of seven. He was a Jeopardy! College Champion and runner-up in the Tournament of Champions. Jeff lives in Cary, North Carolina.
Key Moments:
4 minutes: On living with uncertainty - “If my cancer gets to be metastatic, for the very particular kind I have, the average life expectancy is between five and six months, if it progresses. On the other hand, roughly speaking, there's a 50% chance that I am already cured. That what they have done with a combination of chemo, radiation, and surgery has already cured me. So I can be sitting here right now with a completely normal lifespan in front of me. I used to think of my life maybe in 5-10 year chunks, where I might change a job or think about how I might invest a certain amount of time for that future. And that's gone now. Now my investment has to work both for the next five months and has to work for the next 50 years, which is just a strange place to be.”
38 minutes: On the difference between biases in regulated healthcare versus unregulated alternative treatments - “So I mean, it makes sense to all of us to say that pharma companies are biased. They are. They're my clients, they are. This is just how it is. They're there to make money and cure patients. It's not just pure altruism out there. The [alternative medicine companies] are also there to make money, but don't have somebody threatening to arrest them if they lie about things. They don't have somebody checking their work. It's just a completely different ball game. It is the difference between being cold because it's winter and cold because you are in outer space.”
47 minutes: On why Jeff wrote his book - “At the time when I decided to start writing, it was when I'd already had surgery and it was then at that point possible. They thought I had metastatic disease. And so that was the point where they thought I had five months left. So in that case, I wanted to get these tips that make life in general, not just life with cancer, into the hands of my kids, in case I'm not there to help make life easier.”
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Jeff’s NPR article
Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Dr. Douglas Blayney, past ASCO president and oncologist, gives us his thoughts on some of the key scientific themes presented at the 2023 ASCO annual meeting. In the field of breast cancer, there are three key areas of interest Dr. Blayney discusses. First, there is growing attention towards the use of CDK 4/6 inhibitors in the treatment of hormone positive breast cancer. Second, the significance of somatic cell DNA testing is being recognized. This testing can inform treatment decisions at different stages of the disease and help identify when a change in treatment is necessary. Lastly, there is a focus on the emerging role of antibody drug conjugates, which can selectively kill cancer cells in a more targeted way. Samira and Dr. Blayney also discuss how patients learn from and use this new information in partnership with their physician.
Key Highlights:
- What are CDK 4/6 inhibitors and why are they important?
- How can genetic testing inform cancer treatment plans?
- How do physicians and patients think about and integrate new scientific findings?
About our guest:
Dr. Doug Blayney is an oncology physician who specializes in breast cancer. His research focuses on quality improvement in cancer care systems, new drug development, and patient experience improvement. At the American Society of Clinical Oncology (ASCO), he was founding Editor-in-Chief of its flagship practice journal, and as President, started the ASCO Quality Symposium and began planning for ASCO’s CancerLinq. He was a founding member of the National Comprehensive Cancer Network (NCCN) Growth Factor Guideline panel, and is a past member of the U.S. Food and Drug Administration’s Oncology Drugs Advisory Committee and the NCCN Board of Directors. Dr. Blayney leads the Manta Cares Scientific Advisory Board.
Key Moments:
8 minutes: What is a CDK 4/6 inhibitor? “When that estrogen receptor growth pathway is shut down, the cell compensates, or many of the cancer cells compensate by this CDK 4/6 pathway. And it turns out that if you combine estrogen blockade with blockade of the CD46 pathway at various steps, you can have an augmented or more effective therapeutic approach.”
18 minutes: On the types of DNA and how they impact cancer treatment decisions: “There are two kinds of DNA. There's germline DNA, which is present in every cell in our body. Then there is somatic mutation, which happens to various cells. Whether it's in a breast cell or a lung lining cell or a colon lining cell, an accumulation of those mutations in the right spot can lead to a cancer.”
33 minutes: On thinking about decision making with new scientific advances: “Your listeners may remember that 20 or 30 years ago, randomized clinical trial looked at circulating tumor cells monitoring versus standard monitoring. And the circulating tumor cell DNA did not improve survival, probably because of the sensitivity of the test. Plus the treatments 20 or 30 years ago weren't as efficacious. There weren't as many of them. So if the cancer was growing, but you didn't have an effective treatment for it, so what? Looking at this now, the situation has changed. The test is probably more sensitive, and we have more treatments.”
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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There is a lot of buzz around the annual ASCO meeting, which brings together 40,000 oncology professionals from around the world. But as a patient, what does that mean for us? Dr. Douglas Blayney, past ASCO president and oncologist gives us a behind the scenes understanding of the purpose, process and outcomes that are driven by the information shared at the ASCO annual meeting. He shares how different stakeholders in the oncology and healthcare ecosystem play a role at the meeting, and how the information is used to improve patient care and also drive innovation.
Key Highlights:
- What brings 40,000 people to Chicago for the ASCO annual meeting?
- How does the scientific information presented at ASCO impact patients and the public?
- The importance of transparency and trust in presenting scientific findings.
About our guest:
Dr. Doug Blayney is an oncology physician who specializes in breast cancer. His research focuses on quality improvement in cancer care systems, new drug development, and patient experience improvement. At the American Society of Clinical Oncology (ASCO), he was founding Editor-in-Chief of its flagship practice journal, and as President, started the ASCO Quality Symposium and began planning for ASCO’s CancerLinq. He was a founding member of the National Comprehensive Cancer Network (NCCN) Growth Factor Guideline panel, and is a past member of the U.S. Food and Drug Administration’s Oncology Drugs Advisory Committee and the NCCN Board of Directors. Dr. Blayney leads the Manta Cares Scientific Advisory Board.
Key Moments:
9 minutes - On what’s important about the ASCO annual meeting: “The ASCO annual meeting has a long tradition of having breakthrough therapies announced. Traditionally, on Sunday afternoon, the highest impact scientific findings are announced in the plenary session, which this year had four abstracts featured.”
27 minutes - On the importance of scientific meetings for clinicians and patients: “Most clinicians and oncologists want to do the best for our patients. Having said that, we can't be everywhere, and we can't know everything, so we do rely on other sources of information, maybe secondary or tertiary sources of information about what went on at the ASCO meeting and other scientific meetings.”
33 minutes - On the integrity of scientific data presented at ASCO: “ASCO is a largely volunteer professional society, with the exception of the elected officers, or actually the president and board chair, etc. So three or four elected officers and the journal editors are compensated, and all other ASCO activities are essentially donated by interested parties. And part of the American tradition, as de Tocqueville pointed out in the early 1800s, is that there's this large tradition of volunteerism in our society, which is great and very satisfying. And which ASCO takes advantage of and gives a very positive outlet for clinicians, doctors, and other advocates who want to volunteer to make the world better.
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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
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Dave Durante, former USA Gymnastics Olympic team member and co-owner of Power Monkey Fitness, talks about his journey from elite athlete to coach. He details the importance of consistency in movement of the body, and the value of smaller but consistent periods of activity each day. Dave shares tips on how cancer survivors can start to regain some of their strength and mobility back after treatments, and the importance of having support along the way to maintain consistency and achieve fitness goals. He also reminds us to prioritize the process and not the end result.
Key Highlights:
- The importance of mental fitness to help improve physical fitness.
- Tips for cancer survivors to regain strength and mobility after treatment.
- The power of consistency and focusing on the process rather than the end result to achieve goals.
About our guest:
Dave Durante is a multiple time USA gymnastics national champion and a member of the 2008 Beijing Olympic Team as an alternate. Following his retirement from competition, Dave helped coach his alma mater, Stanford University, to an NCAA Team Title in 2009. He remained involved in the sport by serving on the Athlete Advisory Committee with the United States Olympic Committee and the USA Gymnastics Men's Technical Committee until 2018. From 2013-2015, Dave was a lead coach with the CrossFit Gymnastics L1 course, where he developed the CrossFit Gymnastics Advanced Course. Dave is now the co-owner of Power Monkey Fitness and Power Monkey Camp, which host adult fitness events worldwide. They also provide technical education in various training specialties through their social media platforms and their Power Monkey Training app.
Key Moments:
12 minutes: On the importance of mental health to perform - Leading up to the 2004 Olympic Games in Athens, I just missed out on the Olympic team. I was part of the Olympic selection process team, one of the last ten guys. They took eight to Athens. I was one of the two that they didn't take to Athens. I did everything I could, and I was in the best shape of my life. I was so ready competitively, but I was mentally a mess. Everything that I'm doing well physically, the complete opposite is happening on the mental side. So I found a balance in my teammates and things outside of the sport.
36 minutes: How to ease back into exercise after cancer treatments - Start with bodyweight. Don't worry about picking up weights and the reason for it is because you have to learn how your body moves through fuller ranges of motion before you can expect to do those movements with external loads. Really phase one is about more mobility as we discussed, but also a stronger core. So those are two things that we recommend people doing on a daily basis. You should spend five to ten minutes on core work. You spend five to ten minutes on mobility work on a daily basis.
40 minutes: On the power of consistency - It's imperative on you to wake up every day and put a priority on how important these things are to you. It doesn't need to start massive. And I think that that's the thing that's really important with consistency. It can start as easy as I'm going to walk to the end of the block today and come back and just do that for this week. I'm going to try to stand up and sit back down to my chair five times, 10 rounds today just to get some squat work in, even if it's just to the chair and try that for a whole week. And then from that week, let me see if I can do two weeks. And I think sometimes what ends up happening is people set the goal so high initially. When we talk about consistency, it needs to start with something attainable, something small, one day at a time, and then allow it to grow from there.
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After experiencing symptoms for a year and a half, Katie Coleman was diagnosed with a rare kidney cancer at the age of 29. She began to share her story on social media (@katiekickscancer), and her honest storytelling of her own experience as well as her advocacy for other cancer patients, has grown a large and engaged following. In this episode, Katie talks about the challenges of getting a diagnosis when you are “too young” for cancer. She discusses how to balance having trust in your doctor with advocating for your own values and priorities. Katie also shares her biggest piece of advice for other cancer patients.
Key highlights:
- The power of social media and storytelling for rare cancer patients
- The value of second opinions and shared decision making with your doctors
- The importance of asking questions and self advocacy
About our guest:
Katie Coleman is a patient advocate who was diagnosed with a rare stage IV kidney cancer in Dec 2020, at the age of 29. She has shared her diagnosis publicly on social media to spread awareness and to advocate for others with kidney cancer and rare diseases. Since being diagnosed, she has also founded a non-profit, started a podcast and is currently writing a memoir. You can read more about Katie on her website at www.katiekickscancer.com.
Key Moments:
2 minutes: On her initial diagnosis with cancer - Right when I was first diagnosed I started sharing on Instagram. I started sharing every day because I was diagnosed at 29 with a rare Stage IV kidney cancer. At the time I knew nothing about cancer, healthcare or really anything medically related. And so I was terrified. All I had to go on was the things I’d seen in books, TV shows and movies about what Stage IV looks like, so I was petrified. I kept hearing from other people that you can live with cancer, and there’s so much life to live. So I started sharing to document the process. And if anybody else came and found themselves in my shoes one day and was also scared, they could look at my story and see what to expect.
28 minutes: On shared decision making between patient and doctor: For me as a patient, I had to decide which route I wanted to take. Do I want to continue with this treatment that is actually working for me? Do I want to stick with the standard of care? Or do I want to take a risk on this surgery, which has the intent to cure, so a much bigger reward, but obviously has a much higher risk because there was a whole lot of things that could go wrong? I think that’s where rapport with your physician really comes into play, being able to sit across from each other and have those conversations, to let them know: these are my goals, and these are the options. Where should we fall in between there? And making that decision with them versus having to do it alone or having them make the decision for you.
42 minutes: Advice for fellow cancer patients: My biggest piece of advice for other patients is to ask questions and advocate for yourself. For more common types of cancers, there are more options and guidelines to follow, but especially the further down the treatment path you get or the more rare type of cancer you have, the more your plan becomes a discussion with your physician. So learning as much about your disease as you can, and then advocating and asking questions is important. You have to ask questions to learn.
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Radiation oncologist and entrepreneur, Dr. Madhu Shetti, gives a “radiation 101” overview to understand more about the art and science of this treatment. She delves into the importance of treating a patient holistically, understanding how cancer treatment fits into the logistics of daily life, and creating a treatment plan to honor this full view of each person. Creating a safe, non-judgemental space for diverse patients is central to her practice of medicine. Dr. Shetti discusses her hope that supportive care will continue to improve over time to give patients a high quality of life after treatments end, and has created skin care products to address some of the longer-term issues faced by patients.
Key highlights
- How to balance cancer treatment with quality of life
- Understanding radiation oncology and holistic patient needs
- Embracing diversity and building patient trust
About our guest
Dr. Madhu Shetti is a board certified, practicing Radiation Oncologist and a Stanford Graduate School of Business alum. She primarily treats black and brown women. During cancer treatments, patients can experience painful blistering skin reactions similar to shingles + long term skin sensitivity. Unsatisfied with currently available options especially for black and brown skin tones, Dr. Shetti developed skin care products to protect and soothe the skin during treatment and prevent secondary cancers for years afterwards. In 2022, Balmere received the Stanford Impact Founder prize (funded by Prime Minister Rishi Sunak & his wife Akshata Murthy) to improve health outcomes in communities of color.
Key Moments
3 mins: How to balance cancer treatment with quality of life - As I was doing this [volunteer] work, I visited several of the cancer hospitals in India and saw many young adults with disfiguring surgeries. So they could undergo cancer surgery, but once they got back to their villages and their homes, they were often not included because they could not eat comfortably in public or they couldn’t hold down jobs because they couldn’t maintain their nutritional status. And that really made me think about what is the point of curing someone of cancer if they have no quality of life afterward? What are some options that we could do to give individuals the choice of undergoing cancer treatments so that they still have incredible quality of life afterwards? How do we preserve as much of the body as possible, both physically and functionally?
15 mins: Important considerations when thinking about radiation treatment - The number one thing I think about is the logistics for treatment. Because we can create the most beautiful, ideal treatment, but if a patient cannot complete it for any reason, then we’ve actually done a disservice to the patient. So I think about: how do I make this manageable for my patients?
29 mins: On building trust with patients - My number one goal is to build trust. Because if you don’t have trust, it’s an uphill journey….I think it’s very important to really listen to your patients to understand their concerns, and not make them feel embarrassed or judged. Because to some extent, we’re only here with you in person for a certain number of days, but outside of that, you are going to go home and live your life. And an average survivor is going to live for 14 years after diagnosis, so we need to make sure we set you up for success in those years to come.
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Part 2 of 2 with Dr. Manuela Kogon, Integrative Medicine Internist, Clinical Professor and author of “When Cancer Visits: How to Free Your Mind from the Grip of Distress and Heal Your Jolted Nervous System.” Dr. Kogon specializes in mind-body medicine and non-pharmacological treatment of illness distress and delves more into the topic of stress. In addition to defining stress, she talks about how a cancer diagnosis opens the door to uncertainty and three specific techniques to help manage that stress and uncertainty.
Key highlights:
- Defining the term “stress” and the impact of elevated distress levels
- How uncertainty activates the brain
- 3 techniques to manage stress and uncertainty
About our guest:
Manuela Kogon is an integrative medicine internist in private practice and a clinical professor at a large university. Dr. Kogon has devoted her life to patients in distress and has helped them connect to their innate ability to heal. She divides her time between California, Europe and rural Massachusetts and is looking forward to the day when humans rediscover their ability to be emotionally present for their fellow beings. You can learn more about her book “When Cancer Visits: How to Free Your Mind from the Grip of Distress and Heal Your Jolted Nervous System” here.
Key Moments:
2 minutes: On the definition of stress: We have to define it because part of the problem is that stress is a huge umbrella term for a million things. And in the context of cancer, I want people to think of it as activation, and in some ways, a chronic activation. So I can either be activated because I’m stimulated by an outside event, like a diagnosis of cancer. But it also happens from pressure from inside. The physics definition of stress is: a force applied to a surface area. So that's how I think of it for myself - what’s pressing from the outside and what’s pressing from the inside.
32 minutes: On dealing with uncertainty: I’m an advocate for the self-regulation of thought. The problem with uncertainty is that it’s fueled by fearful thinking. I know for myself and many other people with or without cancer, thinking really gets out of hand. [So you ask] Can I do something about my thinking? Can I do something about my emotions? Can I do something about my behavior? And there, I always want people to see it in the context of ‘Am I doing these things as a representation of uncertainty and feeling out of control?’ Cancer is an out of control experience and no human likes that. We want control. And there are things you can control. You might not be able to control every single cancer cell in your body, but to some degree you can control your emotions, your actions and your thinking.
42 minutes: On the physical component of stress you can control: People always talk about mind over body, but that’s not a philosophy I follow. For me, it’s really body over mind. There’s a joke where you see someone sitting on the sofa and the mind says ‘get up’ and the body says ‘no.’ And that is the cancer predicament. You should go for a walk, or you shouldn’t be eating that. The mind is very expressive in its demands and the body is like, no thank you – I can barely go to the bathroom, and I’m supposed to go for a walk? So I flip it. What is the body capable of doing? Something it can always do is breathing. The lungs and the heart and the brain are very closely linked through the vagus nerve. So how I breathe doesn’t just affect my heart, it also affects how I think.
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Part 1 of 2 with Dr. Manuela Kogon, Integrative Medicine Internist, Professor and author of “When Cancer Visits: How to Free Your Mind from the Grip of Distress and Heal Your Jolted Nervous System.” Dr. Kogon specializes in mind-body medicine and non-pharmacological treatment of illness distress and talks about the internal and external stimuli that drive stress. She discusses the unique uncertainty that comes with cancer survivorship and how to live your life with daily living versus longer term planning. For those living with cancer, Dr. Kogan talks about the question of quantity vs. quality of life, and how patient values might not always match with those of their loved ones. She also talks about how expansion of these principles to other cultures needs to be nuanced to appropriately account for differences in the cancer experience.
Key highlights:
- Mind-body connection and the internal & external stimuli driving stress
- Learning to live with uncertainty, fear and trauma in survivorship
- Quantity vs. quality of life and the the cost-benefit analysis for people living with cancer
About our guest:
Manuela Kogon is an integrative medicine internist in private practice and a clinical professor at a large university. Dr. Kogon has devoted her life to patients in distress and has helped them connect to their innate ability to heal. She divides her time between California, Europe and rural Massachusetts and is looking forward to the day when humans rediscover their ability to be emotionally present for their fellow beings. You can learn more about her book “When Cancer Visits: How to Free Your Mind from the Grip of Distress and Heal Your Jolted Nervous System here.
Key Moments:
19 minutes: On external vs. internal stimuli that drives stress - To separate external stimulation from internal stimulation, when people talk about fight, flight and freeze: if I put a gun to your head you’ve got to be activated, and you’ve got to fight back and run. But people aren’t fully aware that their internal system activates them, too. Someone with fear, if their heart beats faster might say ‘Oh my goodness, am I having a heart attack’ Or someone with pain might say ‘Oh, is my cancer might be back?’ And that’s a very activating thought. So I make people aware if that activation is external or internal.
22 minutes: On how to live while grappling with uncertainty and fear as a cancer survivor - If you have a miniscule chance of recurrence, I wouldn’t want that to affect your life. So that’s an important thing, but uncertainty and unpredictability; it’s like ‘how do I manage my life if I don’t know?’ Am I now going out to live life as though it’s coming to an end tomorrow or do I live life as if I’m going to live another 40 or 50 years? That’s a very different approach to life. And in some ways, you have to do both. And how do you do that? How do you live as though life is going to be shorter with more awareness, or how do you live with life lasting. The different values become important depending on the scenario, and you have to juggle them both. And that is very stressful.
38 minutes: On living with cancer and the cost-benefit analysis of quantity vs. quality of life - You’re caught between all these choices and this optimization of very difficult choices. There’s never a good answer, there’s only a cost-benefit analysis in that if the cost of taking the medicine is that high, and the benefit is this, but if I look at the cost, it’s attached to another cost – it’s a complicated decision making algorithm that’s overwhelming. And then the question arises, if I want quality and it comes at the price of quantity do I have the right to make that choice. Your loved ones won’t like it because they will always go for quantity.
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A July 2021 diagnosis of metastatic breast cancer at the age of 43 completely changed Dr. Yi-wen Huang’s life. In this episode, Yi-wen talks about how she has reprioritized what is important in her life given her diagnosis. Telling her two children about her cancer was difficult, but the entire family has found silver linings in her diagnosis. Yi-wen has already had a number of treatment plans and talks about her decision making process and the positive experience she had as a participant in a clinical trial. She also sums up some of the learnings she’s gathered as she grapples with uncertainty.
Key highlights:
- Reprioritizing life after a metastatic breast cancer diagnosis
- Navigating clinical trials and contributing to science
- Communicating a cancer diagnosis to loved ones and finding silver linings
- Life lessons learned in the face of uncertainty
About our guest:
Dr. Yi-wen Huang is a stage IV HER2+ metastatic breast cancer (MBC) patient. Her diagnosis in July 2021 at age 43 turned her life up-side-down. She has kept a positive outlook despite setbacks on the cancer journey. Yi-wen has a PhD in Physical Chemistry from Harvard University, worked in environmental and biotech instrumentation companies in the Bay Area before the diagnosis. She enjoys her current "retirement" filled with parenting duties, family time, pottery, running and self care (including continuous treatments).
Key Moments:
7 minutes 10 seconds: Staying at work after a metastatic breast cancer diagnosis - I think the fact that it metastasized made it easy to decide my priorities. I was in a lab and thought, “What am I doing here? Is this how I’m going to spend the rest of my life or time? Like any minute of it?” I don’t want to be away from my kids and family. So it made it easier to prioritize.
26 minutes 30 seconds: On how she got involved in a clinical trial - So when I found out it went to the brain, I immediately emailed both my UCSF and Stanford doctors to see if they had ideas or thoughts. The UCSF doctor actually had this clinical trial and encouraged me to come in, and then I qualified. There are different types of clinical trials, different phases, and I was on a Phase 2 trial that means there was no control group yet. So everybody gets the medication, and they want to see how well it works. I actually really enjoyed my experience on the clinical trial.
39 minutes 40 seconds: After telling her kids she had cancer - Pretty quickly life went back to normal. We live as normal a life as we can with the difference being that I’m a stay at home mom now, not a career woman. My kids will actually tell you that cancer is not all bad. They say we’re much closer now. We don’t talk about the future, we just enjoy all the moments we’re together.
45 minutes: Life lessons learned by living with uncertainty - My biggest lesson is to enjoy the moment. Enjoy your life all the time, every day. It’s a privilege and don’t think about how long, how much. Just take now. Take as much as you can, and live it day by day, moment by moment. Enjoy it to the fullest.
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Dr. Gayatri Gowrishankar, a cancer researcher, talks about how her professional life collided with her personal life when her daughter was diagnosed with a brain tumor. After a number of confusing symptoms, Gayatri followed her motherly instinct when she felt something wasn’t right with her daughter’s health. Dr. Gowrishankar talks about what her daughter remembers about her experience at the age of 9, the power of positivity for kids with cancer, and reaching out for support as a caregiver. She also talks about ways to better the experience for childhood cancer patients in India.
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The power of imaging for cancer early detection
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How a personal cancer diagnosis motivates and inspires professional work in the cancer research lab
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Following motherly instinct to push for a diagnosis for your child
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Caring for yourself when you’re a cancer patient’s caregiver
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How to best support kids with cancer
About the guest:
Dr. Gayatri Gowrishankar is a research scientist deeply invested in the business of diagnosing diseases. After being awarded a PhD in Biochemistry from the University of Hannover, Germany, she moved to California to continue her postdoctoral studies in the Molecular Imaging Program at Stanford University where she was introduced to the power of using molecular information to diagnose complex diseases like cancer. She stayed on at Stanford University as a Research Scientist under the mentorship of the late Professor Sanjiv Sam Gambhir who was a pioneer in the field of Molecular Imaging and laid the foundations for early detection programs in Oncology. At Stanford, her work focused around developing novel diagnostic imaging agents, particularly positron emission tomography (PET) tracers for Oncology and Infectious Diseases. She has co-authored numerous scientific publications and participated in several scientific conferences. She is now working in the External Partnerships/Scientific affairs division of Visby Medical, a growing start-up in Silicon Valley with a mission of bringing diagnostics to the patients.
Key Moments:
6 minutes: On the science behind and impact of PET scan imaging - They inject a radio labeled glucose molecule, and it turns out that cancer cells have this attraction for glucose, so they eat up glucose. Cancer cells are continuing to grow, proliferate and divide, so they need energy and consume a lot of glucose. So that’s why they take up this glucose tracer. Then the patients go through the PET scanner and the area where the glucose has been taken up just lights up. And it turns out, it’s an exquisitely sensitive modality, or imaging technique, because it's able to pinpoint very small masses of cells all over your body. It tells you where all the cancer has spread in a patient.
22 minutes: On the uncertainty before test results - I still remember going back to the car after the doctor’s appointment, and my husband was waiting and said, “You know she's just not eating. There's nothing wrong with her.” But at this point I think the mother’s instinct kicked in. I think all the mother’s listening in will identify because you know when there is something really wrong. You know when there’s a simple thing like a scrape and they just need a bandaid. But you know when something’s not right with your child.
41 minutes: On reaching out for emotional support as a caregiver - In my case, I was a staff scientist at Stanford, and Stanford has a staff health center. You can book a session with a counselor to talk about anything. You can talk about work. You can talk about grief. So I made use of that because I felt like I needed to talk to someone. And it was hard to talk to my husband because we were both so emotional, and we would just break down talking to each other. So I had to reach out for help.
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Our guest this week, Carolyn Taylor, is a photographer, a supportive cancer care advocate and a survivor of ovarian and endometrial cancers. She talks about how she has developed broad-based partnerships and built strong alliances among a variety of stakeholders to introduce meaningful and lasting evidence-based, cancer awareness and supportive initiatives across resource settings. She discusses the differences between the healthcare systems in countries around the world versus the healthcare industry we have in the United States. While specific patient circumstances are different, Carolyn also talks about the universal stories that bring cultures together when they hear the words: “You have cancer.”
Key highlights:
- The intersection of art and global health
- Universal power of storytelling to fight cancer stigma globally
- The importance of developing culturally appropriate cancer programs
- The difference between a healthcare system & a healthcare industry
About our guest:
Carolyn Taylor is a photographer, a supportive cancer care advocate and a survivor of ovarian and endometrial cancers. In 2010, after winning a grant from British Airways, she logged more than 120,000 air miles, visiting 14 countries using photography and interviews to document that regardless of race, religion, nationality or economic status, we are all one in the battle against cancer. Inspired by the people she met and the lack of education and support we tend to take for granted in high-resource settings, Carolyn founded Global Focus on Cancer (GFC), a non-profit organization in late 2011 to act as an agent of simple and effective change to help reduce the global burden of cancer through programs in cancer support, awareness, education, advocacy and networking in countries where access to information about cancer is critically lacking.
Key Moments:
7 minutes 45 seconds: On combining photography and art with global health – Everybody needs to tell their story. It's really important for people to have someone listen to their story. It's a way for them to get out their experience, to normalize it or equalize their experience. In addition to getting their stories out, getting this data out there in a more digestible, humanistic way, it also is an opportunity for people to share their story. To share “I am not just a number, I’m a person. I’m not just a statistic.” And to share that lived experience with another person who has heard the words: “You have cancer.”
22 minutes 21 seconds: On how to develop culturally appropriate programs – If a program is not coming from within the country, it's not going to be sustainable or appropriate. We have to have the buy-in of the country. We really look to help support the development (seed money and seed ideas) based on the resources within the culture.
40 minutes 40 seconds: Difference between a healthcare system & industry – I wish people would be more open to the idea of a centralized healthcare system. It works very well in a lot of social-democratic countries like Finland, Norway, Denmark, France, Italy. It’s free for people. You pay a little more in taxes, but it’s really quality care. The healthcare industry in the US has done its job to poison people’s thoughts on universal health care for their own profitability.
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Our guest this week has lived with a slow growing, incurable cancer for the past two decades. She tells us about how she has modified her lifestyle using nutrition as well as a combination of distraction and mindfulness to grapple with the mental challenges of uncertainty. She talks about the idea of “median survival statistics” and how a powerful essay by Stephen J. Gould helped her see those stats in a different light. She also discusses the evolution of treatment and imaging over her 22 years as a patient, and the powerful scientific progress that has been made during that time.
Key highlights:
- The unique nature of indolent (slow growing) cancer and living as a patient for +20 years
- Examining median survival stats and Stephen Gould’s paper “The Median Isn’t the Message”
- Nutrition modifications and the shift to a plant-based diet
- Grappling with uncertainty using Distraction + Mindfulness
- The evolution of treatment and imaging in her cancer over the past 21 years
About our guest:
Rowan Carlson is an aquatic ecologist who was diagnosed in 2001 with an incurable form of Non-Hodgkin’s lymphoma that requires repeated treatment. Thanks to her doctors who carefully timed her treatments and family and friends who supported her in a myriad of different ways, she continued teaching at the college level and conducting research abroad through 2019. Now retired from teaching, she gardens episodically, hikes daily, demonstrates monthly for climate action, and habitually writes scientific papers.
Key Moments:
7 minutes 50 seconds: I heard a nutritionist speaking to a group of cancer patients at a local wellness center. And I found that what she was recommending was so different from the way I ate that I thought it was radical. So I made appointments with two other nutritionists specializing in cancer patients, and all three of them were advocating the same healthful diet. They were advocating a plant-based diet avoiding red meat and processed meat and filling your plate with vegetables.
15 minutes 35 seconds: There’s a very powerful essay written by a famous biologist, Stephen J. Gould, and the title of that essay is “The Median Isn’t the Message.” He was prompted to write this essay because he had just been diagnosed with a very rare form of GI cancer, and he quickly dug up a medical paper and learned that the median survivorship of this cancer was 8 months. The essay describes how he dealt with this. He convinced himself that he would live longer than that, and most people do live longer than the median. He lived for another 20 years and died from a different type of cancer.
17 minutes 24 seconds: What has really helped me since that first year after my diagnosis are two things. One is distraction. I distract myself by keeping very busy on projects that are larger than myself, for instance writing scientific papers and more recently working with three climate action groups. I find this work very fulfilling, and it does distract me, but you can keep yourself too busy and that can rob you of time with family and friends, which is also important, so I try to balance distraction with something called mindfulness. Mindfulness is the idea of living in the moment, and it’s been very helpful for me.
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Our guest is Jane Gutkovich who was thrust into the land of patient advocacy and navigation after her son was diagnosed with Epithelioid Hemangioendothelioma (EHE), a rare type of sarcoma cancer. Given the rare nature of EHE and after four different treatment plans from the four of the top cancer centers in the US, Jane had to turn to other patients to help determine her son’s path. Jane talks with Samira about the decision process for rare cancer patients with small amounts of available data, the role of the family caregiver, the power of patient advocacy and the evolution of patient communities.
Key highlights:
- The power of patient organizing and advocacy
- Decision making for rare cancers with small amounts of data – relying on some combo of trust, faith and instinct
- The role of the family care team to support patients
- The evolution of patient communities from small to larger and the opportunities and challenges that presents
About our guest:
Jane Gutkovich is one of the founding members of the EHE Foundation, and has served on the Board of Directors. Her responsibilities as Vice President of the Foundation included: furthering the foundation’s impact by securing strategic partnerships with relevant organizations, institutions, and individuals; raising funds to support key initiatives; and growing EHE awareness in the medical and research communities. She maintains a deep engagement with the EHE community and active member of our EHE Facebook support group, as well as through personal communications and meetings.
Key moments:
4 minutes 58 seconds: I remember driving in a car to the fourth doctor, and I look at my husband and I said, you want to bet that because there’s only one combination left that this guy will say yes to surgery and no chemo. Sure enough, that's what happened. The best sarcoma specialists in the country gave us totally opposite recommendations. What do you do? Well, you learn and you have to make your own decision.
8 minutes 26 seconds: So I got in touch with some patients. And we knew that we had to do something. The only thing we could do was organize a very tight community. One of my friends had this brilliant idea to launch an EHE Facebook group. It was launched in September of 2013 and was 7 or eight of us on in this group in the beginning. And I remember checking every day five times a day to see if anyone else joined. And every new person who joined was like, “Yes, we have another person!” And when we had 20 patients in the group, I thought, “We're not rare!” And by the way, today we have more than 2400 members in our EHE Facebook group from almost 80 different countries.
22 minutes 27 seconds: We were all in it, me and my husband and my older son. I think he saw that there was a team to cover him. We were not always on the same page. Don't get me wrong, there were fights. But I think my son kind of decided that he cannot do better than I will do, than we will do, than this team will do. He took the position of: I'll trust what you're saying, but it has to make sense to me. He was never like, “okay, whatever you say.” I had to present him with my rationale. But that's the kind of relationship that we developed after he was diagnosed.
USE CODE EHE23 for 10% discount on Manta products and services. We will donate 10% to the EHE Foundation.
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When we think of a cancer diagnosis, we focus on the physical ramifications of the disease. But a cancer diagnosis also leads to major financial costs. Today we are speaking with Rosie Cunningham, COO of Family Reach, about financial toxicity, health inequities and tips for patients and caregivers on how to navigate the financial landscape of a cancer diagnosis.
Key highlights:
-
Financial toxicity is driven by lack of transparency in the healthcare system as well as the complicated nature of cancer care
-
Health inequities drive financial toxicity and are deeply rooted in the healthcare system
-
Tips for patients and caregivers on navigating financial challenges during the cancer experience
About our guest:
As COO at Family Reach, Rosie plays a pivotal role in the progression of the organization’s services, research, and collaborations. She launched the inaugural strategic planning process in 2019, and works closely with the team to ensure that all internal and external activity is aligned to push the mission forwards. She also oversees the organization’s content, programs, and impact teams, driving awareness of Family Reach as a data-driven thought leader and solution provider on financial toxicity. A strong believer that no one deserves the turmoil caused by a cancer diagnosis, Rosie applies her sales, marketing, and partnership expertise to guide Family Reach toward ensuring no family has to choose between their health and their home.
Key Moments:
6 minutes 30 seconds: 2/3 of people living with cancer are unable to work full time after a diagnosis. Of the families we serve 65% of them have lost over half of their household income. So before you even get into the web of healthcare costs, you’re already in crisis, unable to make ends meet.
9 minutes 30 seconds: People with cancer are more likely to file for bankruptcy, but beyond that, people who do file for bankruptcy are 79% more likely to die from their disease. So financial toxicity is not just a financial problem it is literally a life or death problem.
16 minutes 40 seconds: Our mission at Family Reach, which is to alleviate the financial barriers that stand between a patient and their treatment, is rooted in health inequities. For 25 years we've served patients from across the spectrum who are unable to get to treatment because they can't afford it one way or another. Over the last decade, we as a cancer community have done a better job looking more closely at these inequities and charging ourselves to really challenge and understand the root causes and do better to close the gaps. At Family Reach what that has meant for us is to really hone in on low-income Black and low-income Hispanic Latinx patients because these two communities are most adversely affected by the financial burden of cancer.
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We are kicking off 2023 with the fabulous cancer survivor, healthcare entrepreneur and thought leader, Jennifer Hinkel. As a survivor of Stage III Hodgkin Lymphoma, Jennifer has a special interest in oncology innovation as a cancer survivor. She is passionate about using data to improve the lives of cancer patients, and also making sure that patients are aware and compensated for the use of their data.
Key highlights:
-
What advice would adult Jennifer give to her 17-year-old self about being diagnosed with cancer?
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The importance and value of patient data
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Building the bank for patient data
-
Henrietta Lacks’ cell line and its incredible impact on science relate to digital patient data today
About our guest:
Jennifer Hinkel is an oncology market access and health economics leader with experience in consulting, global pharma and biotech, health policy, and health care startups. She has held management and executive roles at companies including National Comprehensive Cancer Network, Roche UK, Roche Argentina, Genentech, and Caris Life Sciences. She is a Managing Director of The Data Economics Company where she leads commercialization of the Lydion Engine in life sciences and healthcare applications and is a Founding Partner at Sigla Sciences, a market access firm.
Key Moments:
7 mins 22 secs: Walking through a portal. One of the things I recall most strongly is this feeling that I walked through a door, a portal to a different world. No one around me had seen that world. They didn't even know that that world existed. And it is not a super pleasant world, it's a world full of a lot of scary things. Although it's also a world full of like a lot of really smart people and people who are out there trying to be helpful and to make the experience better for people. I think that the most important thing to say would be: you might feel like you're the only one that's gone through this, but there are actually other people out there going through the same thing.
18 minutes 37 seconds: Getting compensated of your data
I philosophically believe that this is data that is generated by you, a patient. Yes, you plus an X-ray machine or you plus a doctor. Most of us don't walk around just spouting genetic sequences out of the air, but there has to be some science applied. But really that data is yours. It's pretty unique to you, and that should belong to you. And if other people are using it, especially if they're using it for a business purpose, I think you should get to share in that.
27 minutes 27 seconds: Story of Henrietta Lacks.
This woman Henrietta Lacks, who had cells taken. And her cell line has become a mainstay of biotech research for decades and decades. Only recently it was recognized, that this woman was never really compensated for the contribution that her genetic material made to science. I think that we will start to have that same idea on the digital data. Just because it's in a digitized format, I think doesn't make it any less personal or unique to us really. This data is just the output of your medical procedure or what your body produced.
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Key highlights:
- The art and science of personalized cancer treatment.
- What are tumor boards, how do they work, and why are they important for cancer treatment decision-making?
- Team-based oncology care delivery, understanding patient preferences, and providing appropriate care.
- The business of oncology and how reimbursement influences patient care decisions.
About our guest:
Dr. Gabriel A. Brooks is an oncologist in Lebanon, New Hampshire and is affiliated with multiple hospitals in the area, including Dartmouth Hitchcock Medical Center and White River Junction Veterans Affairs Medical Center. He received his medical degree from Perelman School of Medicine at the University of Pennsylvania and has been in practice for 11-20 years.
Key Moments:
At 16 mins and 0 seconds: About team-based care in cancer.
“Nothing I do for my patients happens in a vaccum. There are questions about radiation, radiology or pathology…the cases we bring to tumor board are the cases where we have questions. It maybe for a patient with a new diagnosis or a patient I’ve had for years and the situation has changed and there is a new question. I could send the patient to another specialist but it’s not the same as four specialists in one room looking at a single case.”
At 30 mins and 05 seconds: Tumor board vis-a-vis guidelines.
“The NCCN guidelines are very influential documents that say what the evidence is in that cancer type. They are not proscriptive. There are lots of areas that are highly subjective in patient care. It’s also true that they are a US organization and refer to drugs available in the US. Tumor board addresses the issues where guidelines are not detailed enough, or where more subjective discrimination is required.”
At 32 mins and 50 seconds: Guidelines drive most situations.
“95% of the time, or rather 99% of the time…most of the things that I do are consistent with the NCCN guidelines. Once is a while there is situations where the guidelines don’t apply.”
At 39 mins and 12 seconds: Decision making in cancer.
“The idea that you can make this decision today that is going to specify every step along the way for the rest of the year for most of our patients is not realistic.”
At 41 mins and 13 seconds: Honesty in difficult conversations.
“I think it is very important for me to be truthful to my patients and tell them that my goal is to help you live longer and help you, but maybe not to cure you. …It’s not my job to tell my patients what the future holds, because we really don’t know.”
In this episode, we cover:
- Intersectional experience as a cancer survivor across sex, sexuality, and dating.
- Nuances of cancer stigma in South Asia and how to navigate it.
- The need for creating resources specific to the South Asian Young Adult community.
About the guest:
Sanjay is a Learning Designer who currently leads L&D at Pride Circle. He has previously worked as a part of the Founding Team of Harappa Education and the skilling team of NASSCOM Foundation. He is passionate about mental health, queer rights and cancer advocacy.
He got diagnosed with incurable brain cancer at the age of 29 the day he landed on Harvard University's campus to start his Master’s program in September 2021. He's currently leading an effort to write & publish a first-of-its-kind book on Adulting with Cancer called ‘Don’t Ask Me How I’m Doing: Life, Death and Everything in Between’ -- to chronicle the experiences, raise awareness and create a resource for Indian and South Asian young adult cancer patients, survivors and caregivers.
He is an incoming graduate student at Harvard University, a postgraduate of the Young India Fellowship program at Ashoka University, and a Valedictorian and Student of the Year from St. Xavier’s College, Mumbai.
Key Moments:
2 mins and 3 seconds
So my understanding of privilege was very different. Because even if I identified myself as a queer person, it came with many safety nets around me. That went away when I got diagnosed with cancer. Now not only was I disadvantaged because of my sexuality, but I was at a disadvantage because of my cancer experience.
6 mins and 23 seconds
So there is this generation of queer people who have just realized that they can be themselves. They are in that phase where they're trying to explore things. They're trying to be openly themselves. There's that frog in the pond syndrome. There are so many fish in the sea, why do you want to settle for one, so everyone's trying to experiment and like, you know, like, find their own feet.
25 mins and 32 seconds
The worst thing is when you reveal in a public sort of space, and that public, I don't even mean like a huge stage or like in like a large audience, even when it's just five people together, and you just say that. No, I'm sorry, I can't do this because I'm a cancer survivor.
In this podcast we cover -
- How to live a life with an incurable cancer
- Using creativity in moments of darkness
- Creating a cancer support community for South Asians
About Sanjay Deshpande:
Sanjay is a Learning Designer who currently leads L&D at Pride Circle. He has previously worked as a part of the Founding Team of Harappa Education and the skilling team of NASSCOM Foundation. He is passionate about mental health, queer rights and cancer advocacy.
He got diagnosed with incurable brain cancer at the age of 29 the day he landed on Harvard University's campus to start his Master’s program in September 2021. He's currently leading an effort to write & publish a first-of-its-kind book on Adulting with Cancer called ‘Don’t Ask Me How I’m Doing: Life, Death and Everything in Between’ -- to chronicle the experiences, raise awareness and create a resource for Indian and South Asian young adult cancer patients, survivors and caregivers.
He is an incoming graduate student at Harvard University, a postgraduate of the Young India Fellowship program at Ashoka University, and a Valedictorian and Student of the Year from St. Xavier’s College, Mumbai.
Key Moments:
4 mins and 1 second: In response to the question “how are you?”
When you ask that to a cancer patient or survivor, the expectation is that you're likely wanting to hear the truth. But in my experience, most people aren't ready to hear the truth. They don't want to know that you're struggling, they don't want to know that you're having a mental breakdown. They don't want to know that you are in pain.
18 mins and 23 seconds: Living life with cancer
Earlier before cancer, the way I used to usually socialize with my friends was over drinks or over a smoke or going out dancing or to a party. Almost all of them I'm not allowed to do. I can't drink because they tried to trigger my seizures. I can't smoke because, hello cancer. I can't go dancing because my skull hasn't healed from my surgery. I can't stay up late at night because it triggers my cancer and triggers my seizures. So how do you then re-enter this world that you were once a part of, and still live a life right?
30 mins and 3 seconds: About that moment post-treatment.
It's kind of like you've you're like running really fast to get to this destination and then you realize the destination is actually a cliff and you're jumping off and you're like ‘oh god I am falling.'
Key takeaways:
- The changing role of the Oncologist - Starting as the Sherpa, transitioning to a mentor, and then breaking up!
- Awareness of barriers the LGBTQ community faces in accessing healthcare
- The distinction between addressing reproductive health and sexual health in cancer care
About Dr. Don Dizon:
Don S. Dizon, MD, FACP, FASCO, is an oncologist who specializes in women's cancers. He is the director of women's cancers at Lifespan Cancer Institute and director of medical oncology at Rhode Island Hospital. He is also a professor of medicine at The Warren Alpert Medical School of Brown University. His research interests are in novel treatments of women’s cancers and issues related to survivorship, particularly as they relate to sexual health after cancer for both men and women.
He is a prolific researcher and writer, and he has authored hundreds of publications, including peer-reviewed articles, books and book chapters. He is an active member of the American Society of Clinical Oncology, SWOG cancer research network, and the National Consortium of Breast Cancers, of which he has served as both vice president and president.
Key moments:
12 minutes 27 seconds
That person may be more interested in symptom control, in which case they would find more affinity in a metastatic brain tumor group. But they also may want to see people that look like them, that are like them who are going through this experience because of the threats metastatic brain cancer has on people’s sexual health.
14 minutes 35 seconds
It’s what makes cancer care so multifaceted today. There’s no one person who can really manage all the aspects of cancer care. By that, I mean whole-person cancer care. It really brings in the importance of having a team approach.
21 minutes 8 seconds
There’s a relationship between medical oncologists and their patients that is very difficult to walk away from for a lot of people. It almost feels like severing a relationship and it’s quite an unsettling thing.
In this podcast, we cover -
- Jessica Fishman’s journey dealing with her mother’s death and inheriting the BRCA1 mutation
- Living, while knowing you will get cancer.
- Navigating survivorship, finding a way back into the society and enhancing meaning through giving back to the community
Jessica Fisherman is the Founder of a Non-Profit called, Soulful Sunflower. Jessica was 34 when she was diagnosed with TNBC (Triple Negative Breast Cancer). She was overwhelmed researching products that could have potential reactions due to chemotherapy. She began researching companies that made "good" products for cancer patients. She started getting products and giving them away for free to others.
Soulful Sunflower provides products for free to the cancer community. They go directly to companies to make sure that their product is safe, but can not predict everyone’s allergies or sensitivities and do not take responsibility and accept no liabilities. This is a completely free box that is sent directly to people that have either been nominated by friends or family members or they nominate themselves through social media.
Key Moments:
At 18 minutes and 41 seconds:
I have such little energy, and I need to focus that energy on the good parts (of life).
At 25 minutes:
It is okay to be vulnerable. People understand, even if they have never gone through..they give us the space to make mistakes.
References:
Jessica’s Instagram: https://www.instagram.com/_soulfulsunflower_/?hl=en
Soulful Sunflower: https://www.soulfulsunflowerinc.com/
Key Takeaways
- Giving yourself the permission to prioritize oneself while being a mom, wife, friend, supporter and survivor. Using the “mid-day reset,” to quieten the cancer devil on the shoulder.
- Dr. Maeve’s coaching approach helps Molly identify her goal, drive clarity, and create actionable steps to “pause” and prioritize herself.
- The juxtaposition of living in the moment, and maximizing time we have as cancer survivors.
Dr. Maeve Baechler
Maeve is a doctor and life coach. She was diagnosed with a rare sarcoma at the age of 25 while attending the University of Washington School of Medicine. Her passion to connect with patients at a deeper level led her to pursue a certification in life coaching during her third year of residency. She specializes in coaching cancer patients and their caregivers.
Molly Lindquist
Molly, a mom and breast cancer survivor. She previously founded Consano, a 501(c)(3) crowdfunding platform for medical research, after her cancer diagnosis in 2011 at the age of 32. Molly graduated from Stanford University with a degree in economics.
Key Highlights
4 minutes 14 seconds
“Why is focus important to you?”
“I think that post cancer especially there is this battle internally to pack in as much as possible before this cancer thing comes back, potentially. That creates a bit of chaos that I want to do this with my kids, and this professionally, and here and there. There’s a lot of stuff…I call it the cancer devil on my shoulder, always there reminding me that time is not a given”
8 minutes and 1 seconds
“There are a lot of different roles, and you can’t be good at everything. You need to pick and choose or allocate better the energy expenditure to each of those roles. The focus piece can specifically be the triage system. Not just what’s most important or urgent, but also what I believe is the most important to focus on. This is not the same as what “they” or the world perceives to be the most important.”
“I have a hard time as a people pleaser to reconcile that as well.”
14 minutes and 45 seconds
“Everything tends to be about fitting in what other people or animals need versus taking care of myself, and that’s really hard for me to do because I do want to be there for other people.”
27 minutes and 44 seconds
“Another benefit is that you might be role modeling a healthy way to not only stay healthy but show yourself some self-respect, that maybe something your daughters cue into.”
30 minutes and 27 seconds
“I’ve learned that it is okay to make myself a priority, as difficult as it sometimes feels to squeeze that into the chaos of life. I think by setting boundaries, and giving myself just the 5 minute mid-day pause, I’m also role modeling to my kids that we do need to take care of ourselves.”
Insights from this podcast episode:
- Experiencing breast cancer as an AYA (adolescent and young adult)
- Self-care, the role of journaling and mental health as a cancer patient
- The role and impact of community for supporting young cancer survivors and patients
Yvonne had been working in healthcare for over 9 years when she felt a tightness in her left chest. At first she thought it was from doing too many push ups or a pulled muscle. When she examined it closely, she discovered a lump. Yvonne waited 2 weeks to see her OB/Gyn. She ended up getting her first (of many) mammograms the day after Christmas, followed by a biopsy. She received the fated cancer call the Monday before New Year's Eve in 2019. Diagnosed at 37, Yvonne started treatment in 2020. She (along with the podcast host, Samira Daswani) experience the new healthcare environment with the introduction of Covid-19 to the world. Navigating cancer is one thing, navigating cancer during a pandemic is a whole other world. Both Yvonne and Samira share their experiences in this episode on what it was like to manage both C's -- Cancer & Covid.
When face masks became the norm, and 6-feet apart the slogan, as an immunocompromised person, it was a terrifying time. Going to the hospital for appointments, treatments, and sadly, being admitted, had a whole new isolation to it. The healing promise became all the more challenging.
Yvonne had amazing support from her family and close friends in spite of these social distancing protocols. Yvonne finished her last chemo infusion in July 2020 when she ventured into UCSF’s gift shop. There she saw a book with a title that made her smile under her hospital given mask. “Agony and Absurdity: Adventures in Cancer-land. Young Women and Breast Cancer An Anthology.” This is how Yvonne found BAYS. Yvonne has been a member of BAYS after her “active” treatment ended. She is currently on the committee for the 4th Anthology. Yvonne looks forward to helping the fellow members as BAYS has helped her with her survivorship journey.
Key Moments:
11 minutes and 26 seconds:
“I think the biggest learning from the tribe is self care and acknowledging that is it is okay to slow down and it is okay to not do the 5 million things you were doing before you were diagnosed with breast cancer.”
32 minutes and 41 seconds:
“I would like to see a world in which patients and caregivers are comfortable in looking at their data, feel comfortable balancing risk vis-a-vis their quality of life, vis-a-vis their context of life “
35 minutes and 43 seconds:
“Not everyone can grasp the concept of clinical trial...if you understand what your options are, it is super helpful to feel that you are not just a thing in a petri dish for them to look at, you are more than that."
Show Notes:
Learn more about BAYS on their website: https://bayareayoungsurvivors.org/
Key Takeaways:
-
Overview of ovarian cancer.
-
Karen’s journey and experience of building the National Ovarian Cancer Coalition (NOCC) and the power of the community
-
The science and symptoms of ovarian cancer; building awareness and education resources for women
About Karen Young and the National Ovarian Cancer Coalition
Karen Young has been working in the nonprofit sector for more than 35 years and has been the Midwest Regional Manager for the National Ovarian Cancer Coalition for more than a decade. Located in Chicago, she oversees six states in the Midwest including Illinois, Indiana, Iowa, Missouri, Kentucky, and Tennessee. Ms. Young is passionate about the work she does with survivors. Ovarian cancer is one of the leading gynecologic cancers for women and is very often diagnosed in the latter stages. There is no early detection test for this cancer and the programs and services that the NOCC provides are crucial for that reason. She enjoys community collaboration to find the most meaningful partnerships to support her teal community.
The Midwest region has quite an array of programs and services available to its survivors and serves over 700 women in the region. Ms. Young has a large corps of volunteers helping to execute programs and services in her area including free meals, free counseling, and financial assistance as well as educational programs and support groups. The chapter offers a variety of opportunities for survivors to meet each other and support one another especially through events like their annual Midwest Together in Teal walk to be held October 15th.
Quotes
At 2min and 10 seconds
“Being one of her primary caregivers, and going through that experience, just really gravitated towards wanting to work with a cancer organization. And I knew nothing about ovarian cancer. But it was because of my mom that it interested me.”
At 5min and 20 seconds
“The pandemic pushed a lot of nonprofits, including us, you know, out of our comfort zone to reinvent ourselves to go virtual with everything and everything that we do. And the simple fact is, we were starting to identify some of the most basic needs.”
At 14 mins and 07 seconds
“In fact, the reason why the rate is so high for late stage diagnosis is because there is no reliable early detection test at all, hasn't been in years, they're still working on trying to find one. And even though there are tests that you can get if you suspect like let's say you have symptoms and you go and talk to your general doctor or even your gynecologist and you suspect that maybe you have ovarian cancer, there are some things that they can do to verify whether you do or not, but they are not reliable enough to become an early detection test that they would recommend for us annually every year.”
At 23mins and 47 seconds
“We talk about the trust and the relationship that we have with our medical professional, you know whether or not you can really feel comfortable that you're getting the best care and they are going to guide you and tell you what you need to know. And if it's really not important at this time, then don't bother me with those details. I can sleep better at night, if I don't know.”
Resources
An Animated Patient’s Guide to Ovarian Cancer - https://nocc.ovarian.org/animated-patient-guide
In this podcast we cover -
1 Personal experience and reflections from being a caregiver
2 Understanding the survival early-stage oncology investing ecosystem
3 Emerging themes and trends in oncology innovation and patient care
Mark Mendel is the Managing Director of Mendel Consulting LLC. They advise fund managers and scientific and technical founders, and guide company-building and fundraising activities at multiple start-ups. Prior to this, he was a Venture Partner at Artio Medical and Director at Intellectual Ventures. Mark served as managing director of RiverVest Venture Partners, which he co-founded. Before RiverVest, Mark was a vice president with ARCH Venture Partners. During his four-year tenure there, he established the firm's New York City operations, co-led the seed financing at Optobionics and served as board observer at Optobionics and GenVec. He has also been a Kauffman Fellow.
Mark holds PhD. in Bioengineering from University of Pennsylvania.
Quotes
At 9 minutes and 5 seconds
I would say to the listeners, just substitute the person's judgement - the one who's struggling - and do what they want. Doesn't matter, whatever it is you think.
At 24 minutes and 30 seconds
But you can break that balkanization that there's your family, caregivers, people in your life previously who are caregivers.
At 29 minutes and 32 seconds
I think one of the rules that makes it a safe place for investment has been, that if you ultimately can develop a therapeutic benefit for patients, it's going to be a winner, and the details that don't matter very much.
At 47 minutes at 50 seconds
There's a lot of interest in seeing how to use nutrition to help with cancer therapy. There's hints of efficacy that are very promising. Now how you go from there to developing a therapy thing is a really important question that I find very interesting.
In this podcast we cover -
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Nuances of understanding value-based care and the invisible care-giver economy
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The importance of caring for caregivers
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Insights on who the caregivers are and their experience with COVID
Nirav R. Shah, MD, MPH, is Senior Scholar at Stanford University’s Clinical Excellence Research Center. He is a leader in patient safety and quality, innovation and digital health, and the strategies required to transition to lower-cost, patient-centered health care. Board-certified in Internal Medicine, Dr. Shah is a graduate of Harvard College and Yale School of Medicine, and is an elected member of the National Academy of Medicine. He serves as an independent director for STERIS plc, as trustee for The John A. Hartford Foundation, as Senior Fellow of the Institute for Healthcare Improvement (IHI), and as a member of the HHS Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030. Previously, he served as senior vice president and Chief Operating Officer for clinical operations for Kaiser Permanente in Southern California, and as Commissioner of the New York State Department of Health.
Quotes
At 3mins 27 seconds
“I learned from the AARP, the American Association of Retired Persons, that unpaid family caregivers are responsible for about $500 billion, that's Billion with a B, dollars of care every year that they're not paid for. So fully 2% 2.5% of our GDP in America is silent, it's invisible.”
At 5mins 18 seconds
For the last few decades in America, we've been talking about this thing called value based care. And what value based care means is that we're not going to be paying for things one at a time, we're going to be paying for improvement in outcomes and overall care.
At 13mins 09 seconds
I'm making a story about how important it is to move care into the home. Well, I think that's what we used to call house calls a few decades ago, right? It used to be normal that the doctor came to you in your home, and actually outside of America, that is still the norm in many other countries. So what we're finding is that we're reinventing and rediscovering what used to work, it made a lot of sense.
At 16mins 22 seconds
The research we've done at Stanford so far has shown that this cost and burden can last decades in terms of psychological impact, in terms of total cost of care in terms of your own health burdens, in terms of having heart attacks, in terms of dying young, as a caregiver, that kind of impact can be averted. And that's the lesson here is take care of yourself. So you can better take care of your loved one as well.
In this podcast, we cover -
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Taking PanCan global and multicultural insights on cancer
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The art of translating a movement into a sustainable organisation
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Importance of doing the hard and obvious things
As the Chair and Chief Executive Officer of Translating Research Across Communities (TRAC), Paula Kim brings more than 30 years of executive and entrepreneurial leadership in business and not-for-profit ventures. Paula is recognized on the grassroots, national, and international levels for her consumer-focused leadership and innovation in communication and outreach for business, healthcare and advocacy strategies. Paula Kim's commitment to advocacy, advancing research, and helping patients and families came from personal reasons – her dad’s pancreatic cancer diagnosis in 1998 and untimely death only seventy-five days later.
Despite no prior experience in national advocacy, patient programs, or public policy, she jumped headfirst into a major transition from building homes to leading volunteers and building hope and programs for patients and researchers. In 1999, Paula co-founded the Pancreatic Cancer Action Network (PanCAN) with Pam Acosta Marqhardt and Terry Lierman, the first national patient advocacy organisation for pancreatic cancer; and served as President, Chairman of the Board, and Chief Executive Officer. In 2004, she resigned from the organisation and moved forward to establish Paula Kim, Inc-TRAC.
Paula Kim’s vision and team-building style led PanCAN’s growth from a handful of online chat volunteers into a national resource for the pancreatic cancer research and patient communities, with pioneering programs for clinical trials matching, PALS-patient services, patient education symposia,survivor-caregiver networks, grassroots development, research mapping, and career development research grant funding. She also led PanCAN’s policy efforts, which yielded then, an unprecedented increase of over 350% in federal government investments in pancreatic cancer research.
Quotes
At 1 minutes and 42 seconds
Back in the early 2000s, I had a number of advocates from other countries that would reach out to me. And so I had a group of fabulous advocates from Japan, for example, that came over and shadowed me for days on end, and wanted to learn about building programs similar in their country. They wanted to learn about how to talk to policymakers. And so I created my consulting practice track translating research across communities, for that purpose to help globally.
At 10 minutes and 12 seconds
“To an extent that's why I want to congratulate you on the Manta Planner, because on one level, it seems very basic and very simple. And you say, well, why has nobody done this before? For this, I have a theory that sometimes people just don't want to put in the effort that it takes to do something.
At 18 minutes and 02 seconds
“There were so many people involved in the growth of pain in PanCan. Our very first staff members and the people that we hired, and the people who were willing to give their time and their resources to a little startup group that had no track record. And the many, many volunteers who poured their heart and soul into everything that we did.”
References
- The PanCan Website - https://www.pancan.org
- The PALs Program - https://www.pancan.org/wp-content/uploads/2013/04/brochure_PALS_2012.pdf
In this podcast we cover -
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Learnings and insights from the early days of setting up PanCan
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Art and science of community building
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Nuances of interdisciplinary collaboration and personal learning and upskilling in the face of complexity
As the Chair and Chief Executive Officer of Translating Research Across Communities (TRAC), Paula Kim brings more than 30 years of executive and entrepreneurial leadership in business and not-for-profit ventures. Paula is recognized on the grassroots, national, and international levels for her consumer-focused leadership and innovation in communication and outreach for business, healthcare and advocacy strategies. Paula Kim's commitment to advocacy, advancing research, and helping patients and families came from personal reasons – her dad’s pancreatic cancer diagnosis in 1998 and untimely death only seventy-five days later.
Despite no prior experience in national advocacy, patient programs, or public policy, she jumped headfirst into a major transition from building homes to leading volunteers and building hope and programs for patients and researchers. In 1999, Paula co-founded the Pancreatic Cancer Action Network (PanCAN) with Pam Acosta Marqhardt and Terry Lierman, the first national patient advocacy organisation for pancreatic cancer; and served as President, Chairman of the Board, and Chief Executive Officer. In 2004, she resigned from the organisation and moved forward to establish Paula Kim, Inc-TRAC.
Paula Kim’s vision and team-building style led PanCAN’s growth from a handful of online chat volunteers into a national resource for the pancreatic cancer research and patient communities, with pioneering programs for clinical trials matching, PALS-patient services, patient education symposia,survivor-caregiver networks, grassroots development, research mapping, and career development research grant funding. She also led PanCAN’s policy efforts, which yielded then, an unprecedented increase of over 350% in federal government investments in pancreatic cancer research.
Quotes
At 6 minutes and 31 seconds
“It was Pam and I, and some debt on our credit cards. And that's how we open the door. And then from that grew, many, many things. And I think most important were things such as bringing together a community of people who cared. Helping them establish a community and a voice. A voice that we then channelled into public policy to try and help policymakers and legislators understand the need for the disease, a community that we developed into volunteers that were all across the country that wanted to raise awareness in their own communities.”
At 14 minutes and 18 seconds
“So in the 22 years since then, have we made progress? The answer is yes. The answer is yes, we have made progress. And in large part it's because there was a small but dedicated bunch of pancreatic cancer researchers.”
At 17 minutes and 42 seconds
“So by building a community of caregivers and family members, we were able to raise our voice on Capitol Hill. A little bit like a Trojan horse, because we weren't as big as perhap, but we tried to make our voices loud. And then we joined together with other cancer advocacy groups and coalition's which again, was a different type of a community, right. And so, you know, taking on that disease, it's been difficult. But now here we are some twenty odd years later. And in those first four years, we got the federal government to increase research funding by more than four to 500%.
At 28 minutes and 45 seconds
“The reality is it was disproportionate because those other cancers that I named, had more advocacy and more people in Washington, DC knocking on the doors, right. And I said to NCI, whether we're here or not, it's your responsibility to take care of this population as all of them.”
In this podcast, we cover -
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Insights on the evolution of medical science, public policy and funding for cancer care in the US
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The importance supportive care, guidelines and resources, and the role of NCCN and the NCCN Foundation
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Framework for understanding life-span and quality of life for patients and caregivers
Patrick Delaney is the Executive Director of the NCCN Foundation. Pat joined the NCCN team in 2021 and is a well-rounded professional with over 30 years of experience in management, strategic planning, sales, change management, government relations, fundraising and constituent care.
Quotes
4 minutes and 38 seconds
“My brother was diagnosed with liver cancer and unfortunately it was a terminal diagnosis and we've since lost him. But it reminded me of my not only passion for, but my commitment to getting back into the cause, which just took me a while to get back here. So [I] started looking for my next opportunity specifically in the cancer space, and found the NCCN.”
11 minutes and 15 seconds
“Our focus with NCCN is to frankly, bring together some of the brightest and best in oncology care to develop our core product known as our NCCN clinical practice guidelines. And these are the guidelines for clinicians that give the, the, the best care recommendations based upon one's cancer diagnosis. What we do here at the foundation is philanthropic.”
15 minutes and 2 seconds
“If I may I'll use breast cancer as an example, there's one clinical practice guideline it's quite large for, for breast cancer. We've, adapted that into three breast cancer patient guidelines to bring it a little bit to your question, more focused for the, for the retrospective patient population. Um, and we just got funding, very excited. We're gonna have our first ever patient guideline for breast cancer screening coming out later this summer.”
20 minutes and 32 seconds
“In the cancer community from a research standpoint, we've created the NCCN foundation’s Young Investigator Rewards Program. The focus for that program is based upon how much funds we can raise at the foundation. These are two year grants to early career investigators within our NCCN member institutions. And again, our member institutions represent 32 of the top academic centres across the US.”
26 minutes and 1 second
“Just looking at the quality of life from date of diagnosis, uh, through end of life, whether it was cancer related death or not in my own family members has been phenomenal just looking at, you know, my, my dad was diagnosed in 1998 with, with lung cancer and just watching the quality of his life. Uh, he made, he survived almost six years post-surgery um, versus several years after that with my mom had her stomach cancer versus several years after that with my sister, with her breast cancer, just quality of life addressing, uh, the, the, the treatment options, the nausea and vomiting impact of the various, you know, treatment object. It's just nice to see such attention.”
References
- NCCN Foundation website – www.nccnfoundation.org
- Access Free NCCN Patient Resources Online - https://www.nccn.org/patientresources/patient-resources (Mentioned at 19 minutes and 21 seconds)
- Access Free NCCN Patient Resources via the Mobile App- https://www.nccn.org/guidelines/nccn-mobile-app (Mentioned at 19 minutes and 21 seconds)
- Create a Free Account to Access Clinical Resources and More at NCCN.org– https://www.nccn.org/register(Mentioned at 12 minutes and 12 seconds)
In this podcast, we discuss -
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Is a chess analogy really appropriate for cancer
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Pros and cons of thinking of cancer in the form of infinite games
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Nurturing ambiguity and taking high stake decisions
In this podcast, you will learn about -
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Are metaphors like “infinite games” valid for approaching cancer care?
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How to develop your strategy when everything seems uncertain and unclear
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The importance of rethinking assumptions
Show notes:
- https://pubmed.ncbi.nlm.nih.gov/23892559/
- https://link.springer.com/article/10.1007/s11764-021-01085-9?utm_source=xmol&utm_medium=affiliate&utm_content=meta&utm_campaign=DDCN_1_GL01_metadata
- https://bmjopen.bmj.com/content/9/12/e031763
- https://link.springer.com/article/10.1007/s11764-021-01085-9?utm_source=xmol&utm_medium=affiliate&utm_content=meta&utm_campaign=DDCN_1_GL01_metadata
- Neoadjuvant vs. Adjuvant cancer: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4224200/
- NCCN guidelines: https://www.nccn.org/guidelines/category_1
- ASCO guideline: https://www.asco.org/practice-patients/guidelines
- Ask you doctor for what they have access to. A lot of US doctors will have access to reports from the following company: https://www.wolterskluwer.com/en/solutions/uptodate
In this episode, you’ll hear about -
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What does the caregiver ecosystem really mean
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Second order effects of being diagnosed with cancer
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Exploring different strategies to grapple with the crisis
In this episode you will learn -
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Emotional, psychological and financial cost of being diagnosed with cancer
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Principles of building a community of cancer survivors and caregivers
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Processing suffering and becoming anti-fragile