NETWise: Recent Episodes
Neuroendocrine Tumor Research Foundation (NETRF)
NETWise, a podcast about neuroendocrine cancer, is here to help patients and caregivers navigate the world of NETs.
The post NETWise Episode 47: Care for the Neuroendocrine Carcinoma Caregiver appeared first on NETRF.
In this episode of NETWise, we’re diving into one of the more aggressive forms of neuroendocrine cancer: neuroendocrine carcinoma (NEC). While many neuroendocrine tumors are slow-growing and manageable over time, NEC is different—fast-moving and requiring swift, specialized care.
- We’ll guide you through the essential information about NEC, including:
What neuroendocrine carcinoma is and how it differs from other NETs - The diagnostic process: what to expect and how doctors identify this disease
- Current treatment options and what patients and caregivers should know If you or a loved one has recently received an NEC diagnosis, this episode is designed to help you start understanding the road ahead.
Resourceshttps://www.thehealingnet.org/high-grade-neuroendocrine
High Grade Neuroendocrine Carcinoma Group
AcknowledgementsDr. Carl Gay, MD, PhD, is a thoracic medical oncologist and research scientist at the University of Texas MD Anderson Cancer Center.
Dr. Aman Chauhan, MD, is a medical oncologist at the Sylvester Comprehensive Cancer Center at the University of Miami, where he leads the neuroendocrine cancer program.
Dr. Renuka Iyer is a medical oncologist at Roswell Park Comprehensive Cancer Center in Buffalo, New York.
Susan Meckler Plummer, RN, runs an online support group for patients with neuroendocrine carcinoma.
Patient AcknowledgementsA special thank you to Deb Roberston and Lori Dolnick for sharing their stories. Click here to download a transcript of this episode.The post NETWise Episode 46: Understanding Neuroendocrine Carcinoma appeared first on NETRF.
This episode is part of a collaboration with the FlaNET Carcinoid Community, focusing on financial toxicity. We explore some of the major costs that can arise throughout the neuroendocrine cancer journey and share guidance on how to find helpful resources.
NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.Joanna Doran, JD, is the CEO of Triage Cancer, a national nonprofit that provides free education on legal issues that may impact people diagnosed with cancer.
Mysti Motz, BNS, RN, is a nurse who previously worked at the University of Miami’s Sylvester Comprehensive Cancer Center, where she provided care and support to patients in the Neuroendocrine Cancer Program.
Samantha Powell, LCSW, is a social worker licensed in Utah and Iowa who has worked with neuroendocrine cancer patients.
Sasha Watson, Pharm.D.,is a clinical pharmacist at the University of Miami Sylvester Comprehensive Cancer Center.
Thank you to Matt Skinner for sharing his neuroendocrine cancer journey.
Additional Resources:
Thank you to Triage Cancer for sharing the following resources:
Practical Guide to Cancer Rights: https://triagecancer.org/guide
Cancer Finances: https://triagecancer.org/cancer-finances
Free medical flights:
https://www.angelflight.com/
https://angelflightwest.org/angel-flight-services/
https://www.mercymedical.org/free-medical-flights
https://skyhope.org/
Cancer and Careers: https://www.cancerandcareers.org/en
For veterans diagnosed with cancer: https://www.cancercare.org/publications/340-building_connections_as_a_veteran_resources_and_support
American Cancer Society:
https://www.cancer.org/cancer/financial-insurance-matters/managing-health-insurance/programs-and-resources-to-help-with-cancer-related-expenses.html
Hope Lodge Housing Information: https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.html
Nancy’s list: https://nancyslist.org/financial-assistance/
Cancer Care: https://www.cancercare.org/financial_assistance
Click here to download a transcript of this episode.The post NETWise Episode 45: Managing the Financial Burden of Neuroendocrine Cancer appeared first on NETRF.
When it comes to PRRT (Peptide Receptor Radionuclide Therapy), patients often have big questions and concerns. In this episode, we dive into the most common questions surrounding PRRT and the broader field of radiopharmaceutical treatments for neuroendocrine cancer. This is an exciting field as there is much more research being done into radiopharmaceuticals for neuroendocrine cancer. Tune in as we break down key insights from doctors and researchers to help you better understand this important treatment option.NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.Beth Chasen, MD, is a Professor, Department of Nuclear Medicine, Division of Diagnostic Imaging, The University of Texas MD Anderson Cancer Center, Houston, TX
Victor Fernandes, PHD is a researcher at the University of Wisconsin Madison and a medical physicist by training, I work with radiopharmaceutical therapies and with neuroendocrine tumor patients and patient data. Victor was awarded a research grant by NANETS funded through NETFRF that focuses on Modeling to predict the benefit of PRRT in NET patients.
Heather Jacene, MD, is a Clinical Director, Nuclear Medicine/PET-CT
Associate Program Director at Brigham and Women’s Joint Program in Nuclear Medicine. In addition, she is an Associate Professor of Radiology Harvard Medical School
Click here to download a transcript of this episode.The post NETWise Episode 44: Radiopharmaceutical Treatment – FAQs & Insights appeared first on NETRF.
Artificial intelligence (AI) has become a hot topic, making its way into everyday conversations and industries worldwide. While AI technologies have been around for years, recent advancements are accelerating their impact—especially in healthcare. From improving cancer research to enhancing diagnosis and treatment, AI is reshaping the future of medicine. In this episode of NETWise, we dive into how AI is driving progress in neuroendocrine cancer research and explore its potential applications in the clinic. Could AI revolutionize the way NETs are diagnosed and managed? Join us as we uncover the possibilities.
To access the NET Clinical Trial Finder mentioned in this episode: https://netrf.org/for-patients/trial-finder/
NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.Danielle Ralic is the CEO/CTO and founder of Ancora.ai, a health tech company dedicated to accelerating innovation in medicine by democratizing clinical trial access. Her service uses AI to help neuroendocrine cancer patients find clinical trials.
Matthieu Foll, PHD is a researcher at the International Agency for Research and Cancer, part of the World Health Organization.
Emilie Mathian, PHD is a postdoctoral researcher at the International Agency for Research on Cancer (IARC-WHO)
Dr. Aman Chauhan, MD, is a medical oncologist at the University of Miami Sylvester Comprehensive Cancer Center, where he leads the neuroendocrine oncology program and co-directs theranostic drug development.
Special Thank youA special thank you to Hector Perez for sharing his neuroendocrine cancer story. Click here to download a transcript of this episode.The post NETWise Episode 43: How Could AI Change Neuroendocrine Cancer? appeared first on NETRF.
Happiness is something that can be difficult to find in life, no matter what. Having an uncommon cancer can make it infinitely harder. In this episode of NETWise, we’re going to talk about what happiness means, and how cancer can affect the way we think about it. We’ll also talk about the things we all can do to be more resilient.NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.James A. Bibb, PhD is a researcher at the University of Arizona College of Health Sciences. Dr. Bibb’s research focuses on basic and translational research exploring the molecular mechanisms of intracellular signal transduction in health and disease. His work on the regulation of dopamine neurotransmission was cited in the Nobel Prize in Physiology for Medicine in 2000.
Robin Lockridge, Ph.D. is a neuropsychologist at the National Cancer Institute at the National Institutes of Health with expertise in the clinical assessment of pediatric cognitive, neurodevelopmental, and neuropsychological disorders as well as children and youth program development. Dr. Lockridge works with the Adult Rare Tumor Network.
Kevin Payne, Ph.D. is a social psychologist and is the founder of an organization, Your Life Lived Well, LLC., dedicated to helping people thrive with the challenges of chronic illness.
Lori Wiener, Ph.D., DCSW, LCSW-C is a clinical social worker. She directs the psychosocial support and research program at the National Cancer Institute.
Thank you to Burt Rosen and Nancy Lewis for sharing their neuroendocrine cancer stories and personal perspectives.Click here to download a transcript of this episode.The post NETWise Episode 42: Finding Happiness While Living with Neuroendocrine Cancer appeared first on NETRF.
Research is at the very core of what we do at NETRF. We believe it is the key to discovering cures and more effective treatments for neuroendocrine cancers. In this episode of NETWise, we will bring you into one of our most exciting yearly events: NETRF’s 2024 Neuroendocrine Cancer Research Symposium. You will hear ways the needle has been pushed in each area of research in the past year. We’ll start with advances in basic research and move through the spectrum to finish with updates that have clinical applications.Click here to download a transcript of this episode.The post NETWise Episode 41: 2024 Year in Review appeared first on NETRF.
In this episode, we’re diving deep into the symptoms caused by functional neuroendocrine tumors (NENs) and, more importantly, how to effectively manage them. Whether you’re navigating symptomatic NETs yourself or supporting someone who is, this conversation will arm you with fresh insights and practical tools to take control. This is a revamped and enriched update of an episode originally released in 2020. A special thank you to Dr. Eric Nakakura for lending his expertise to this valuable update. Thank you to Maureen Edwards and Cy Ball for sharing their stories. Cy Ball, whose story we heard, passed away. We appreciate that he shared his story with us.NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.Aman Chauhan, MD
Medical Oncology, University of Kentucky, Lexington, KY Caroline Creamer, PA-C
Gastroenterology, University of Pennsylvania, Philadelphia, PA Joseph Dillon, MD
Endocrinology, University of Iowa Health Care, Iowa City, IA Eric Liu, MD
Surgery, Rocky Mountain Cancer Centers, Denver, CO David Metz, MD
Gastroenterology, University of Pennsylvania, Philadelphia, PAEric Nakakura, MD, PhD
Surgery, University of California, San Francisco, CA Michelle Kang-Kim, MD
Gastroenterology, Mount Sinai Hospital, NY, NY Heloisa Soares, MD, PhD
Medical Oncology, Huntsman Cancer Institute, Salt Lake City, UT Edward Wolin, MD
Medical Oncology, Mount Sinai Hospital, NY, NY Click here to download a transcript of this episode.The post NETWise Episode 40: Managing Symptoms of NENs—Updated Episode appeared first on NETRF.
Lately, there’s been a lot of talk about immunotherapy, which has transformed treatment for patients with some kinds of cancer. So far, patients with NETs and NECs have largely been excluded from these developments. But there’s hope that the benefits of immunotherapy could one day extend to NENs. In this episode of NETWise, we’re going to explore current research into immunotherapy, and what it might mean for patients. Daniel M. Halperin, MD, Associate Professor and Vice Chair for Clinical Affairs in the Department of Hematology and Medical Oncology at Emory University Eleonora Pelle, MD, Post-Doctoral Researcher, Moffitt Cancer CenterDr. Mauro Cives, MD, Senior Assistant Professor of Medical Oncology in the Department of Interdisciplinary Medicine of the University of BariA special thank you to NETRF board member and NET caregiver, Laurie Littlepage, PhD, for sharing her story. Click here to download a transcript of this episode.The post NETWise Episode 39: What Could Immunotherapy Mean for NENs? appeared first on NETRF.
Whether or not a patient has access to care is one of the most important factors in how their cancer journey plays out. It is crucial for timely diagnosis and effective treatment of neuroendocrine neoplasms. And when you live in a rural place, that access can be complicated. We often talk about how important it is to seek out specialized care for NENs – but we don’t often talk about how challenging it can be to access that kind of care. In this episode, we’re going to focus on barriers to care that people in rural areas tend to face.
Julie Hallet, MD, M.Sc., FRCSC is a surgical oncologist at Sunnybrook Health Sciences Centre at the University of Toronto.
Heloisa Soares, MD, PHD is a medical oncologist specializing in NETs at the Huntsman Cancer Institute at the University of Utah.Thank you to Gene Matthews, Serra Kefeli, and Bev O’Neill for sharing their NEN stories.
Click here to download a transcript of this episode.The post NETWise Episode 38: Rural Care appeared first on NETRF.
Neuroendocrine neoplasms (NENs) can arise in many locations throughout the body; they can grow rapidly; and they can occur under unique circumstances. In this episode of NETWise, we talk through some of the more uncommon locations – and situations – where neuroendocrine neoplasms arise. This episode is devoted to some of those more uncommon situations.
Thank you to the NET specialists who helped with this episode:
Will Pegna, MD, is GI medical oncologist and Assistant Professor of Medicine at Oregon Health and Science University in Portland.
Thor Halfdanarson, MD, is a medical oncologist and a professor of Oncology at the Mayo Clinic in Rochester, Minnesota.
Thank you to Bill Thach, Amit Gattani and Brian McCloskey for sharing their neuroendocrine cancer journey. This episode is dedicated to Amit Gattani, who passed away before the release of this episode.
Click here to download a transcript of this episode.The post NETWise Episode 37: Uncommon Neuroendocrine Neoplasms (NENs) appeared first on NETRF.
If you’re new to this show, welcome. You’re in the right place.
Maybe you’ve been recently diagnosed, or maybe you’re a longtime patient. Maybe someone you care about has neuroendocrine cancer. In any case, you probably have questions. What exactly is this disease? What is it doing in your body right now? And what should you be doing about it? This series will help you find answers to those questions. We’ll speak with some of the best experts on neuroendocrine tumors from all around the world, and you’ll hear NET patients share their experiences. We’ll explain what neuroendocrine cancer is, how it spreads, and explore current best practices in diagnosis and treatment.
This is a revised version of our very first episode. We’ve made some updates to reflect new terminology used to describe different kinds of neuroendocrine cancer. A special thank you to Thor Halfdanarson, MD for his help with this episode update.
Thank you to the specialists that contributed to this episode:
- George Fisher, MD, is an oncologist at Stanford University Medical Center.
- Pamela Kunz, MD, is an oncologist at the Yale Cancer Center.
- Eric Nakakura, MD, is a surgeon at the University of California, San Francisco.
- Thor Halfdanarson, MD, is an oncologist at the Mayo Clinic in Minnesota.
- Dan Halperin, MD, is a medical oncologist and researcher at the MD Anderson Cancer Center at the University of Texas in Houston.
- Xavier Keutgen, MD, is a surgical oncologist from UChicago Medicine.
- Ed Wolin, MD, is an oncologist and director of the Center for Carcinoid and Neuroendocrine Tumors at Mt. Sinai in New York.
- David Metz, MD, was the co-director of the Neuroendocrine Tumor Program at the University of Pennsylvania until his retirement in 2021.
Thank you to Wendy Knoll and Marilyn Kline for sharing their story.
This episode is dedicated to the memory of Marilyn, who passed away after the production of the original episode.
Special thanks to our sponsors for their support of this podcast:Learn about the nervous system, the endocrine system, and the role neuroendocrine cells serve as translators.
Download PDFLearn about symptoms and misdiagnosis. Were you given a wrong diagnosis? What were your symptoms? See how misdiagnosis happens and how symptoms can align with the wrong condition.
Download PDFVisualize stage, differentiation, and grade. What do these mean and what do these say about neuroendocrine tumors?
Download PDFDownload a transcript of this episode###### Take the NET Quiz
Los Angeles-based patient support group LACNETS has developed a NET quiz based on this NETWise podcast. Once you’ve finished listening, test your knowledge.
Helpful links:
NET Knowledge Center
Order a Patient Guide
Find a NET Specialist
NETRF YouTube Channel
The post Episode 1: What You Need to Know About NETs & NECs – Updated Episode appeared first on NETRF.
In the past few months, there’s been a lot of buzz in the NET community about histotripsy. This newly-approved procedure holds a lot of promise for treating NETs, and may prove to be even more exciting in the future. In this episode of NETwise, we’re going to tell you everything we know about this new treatment: how it works, how it came to be, and what it means for NET patients.
Thank you to Mary Seibert for sharing her NET story.
Experts in this episode: Osman Ahmed, MD is an interventional radiologist at the University of Chicago.
Zhen Xu, Phd, is one of the inventors of histotripsy, and one of the founders of HistoSonics, the company that makes histotripsy devices. She’s a professor of biomedical engineering, radiology, and neurosurgery at the University of Michigan.
Click here to download a transcript of this episode.Thank you to our NETWise sponsor:The post NETWise Episode 35: Histotripsy appeared first on NETRF.
In this episode of NETWise, we talk about the experiences of young people living with NETs. This is an update to an episode that was originally published in 2020. A special thank you to Dr. Aman Chauhan, a medical oncologist who leads the University of Miami Neuroendocrine Cancer Program and Dr. Jaydira Del Rivero, a medical oncologist and a board-certified endocrinologist at the National Institute of Health, for their help with this episode update.
These patients face a specific set of challenges unique to their age and need particular kinds of help navigating the NET journey. This group of patients is often called “AYA,” which stands for Adolescents and Young Adults. For this episode, we’re going to concentrate on the “YA” part of AYA – those who are grappling with a cancer diagnosis as college students or young professionals.
Experts in this episode: Dr. Aman Chauhan, MD, is a medical oncologist who leads the University of Miami Neuroendocrine Cancer Program.
Dr. Jaydira Del Rivero, MD, is a medical oncologist and a board-certified endocrinologist at the National Institute of Health.
Dr. Manisha Shah, MD is a medical oncologist at the Ohio State University Comprehensive Cancer Center.
Kaylen Fletcher, LCSW, is a support group facilitator for young adults with cancer at Beth Israel Deaconess Medical Center in Boston.
Dr. Mark Lewis, MD, is the director of gastrointestinal oncology for Intermountain Healthcare, which serves patients in Utah, Idaho, and Nevada. Dr. Lewis is also a NET patient himself. He was diagnosed with a pancreatic neuroendocrine tumor at the age of 30.
A special thank you to Hannah Folkerts and Bethany Ross for sharing their NET journey.
Click here to downlolad a transcript of this episode See below for a monthly online support group gathering for adolescents and young adults sponsored by the Healing NET Foundation. We thank them for sharing this resource with our community!
The post NETWise Episode 34: Young Adults Living with NETs: Updated Episode appeared first on NETRF.
When one is diagnosed with an illness, like NETs, mortality can come to the forefront. Even if your NET journey presents a trajectory of being chronic and is stable, it is not uncommon to have thoughts about disease progression and mortality.
There is also a lot of stigma and discomfort in talking about end of life. The complex nature of neuroendocrine cancer and the variability in its progression can make it hard to predict outcomes, adding to the uncertainty and difficulty in discussing the topic. There is also power in knowing more about this journey and especially the resources that are available for this stage of living. With this episode, we wanted to make space to talk about something that is inevitable- that a part of living is dying.
Knowing about end-of-life care can empower you to make informed decisions about your health and quality of life. Understanding the trajectory of neuroendocrine cancer and the options available for end-of-life care can help us navigate difficult decisions with more confidence and clarity. It allows us to plan ahead, discuss your preferences with healthcare providers, and ensure your wishes are respected, leading to a more dignified and comfortable end-of-life experience.
When you listen to this episode, pay attention when Josh Mailman mentions “enjoying every sandwich” and finding your “what matters most.” There is indeed a power in knowing.
In this episode of NETWise we discussed the paper (posted here) that you can share with your doctor or hospice provider. Practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care in a resource for you.
To learn more about creating your advanced directives, go here.
Click here to download a copy of this episode's transcriptClick here to download "Practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care."Experts in this episode:Jaydira Del Rivero, MD is a medical oncologist and a board certified endocrinologist at the National Institute of Health.
Julie Hallet, MD is a surgical oncologist at Sunnybrook Health Sciences Centre at the University of Toronto.
Josh Mailman, a NET patient, NETRF board member and advocate, is a world authority on PRRT for NETs.
Jena Fosdick, BSN is the regional director of clinical operations for St. Croix Hospice in Omaha, Nebraska.
Special thanks to Boehringer Ingelheim for their support of this podcast. The post NETWise Episode 33: The Power of Knowing: Mortality & End of Life appeared first on NETRF.
Some of the rarest, most complex, and difficult NETs are known as pheochromocytomas and paragangliomas. This is an updated version of an episode that first aired in 2021. A special thank you to Dr. Erik Mittra Chief of Nuclear Medicine and Molecular Imaging at Oregon Health and Science University for his expert assistance with this episode update. This episode update addresses some changes in treated pheos and paras. Between 2018 and 2023, there was an FDA-approved treatment on the market for unresectable, metastatic pheos and paras. This medication was called Azedra. It used similar technology to PRRT, delivering radioactive isotopes to the tumors with a synthetic analog of the hormone norepinephrine. But in 2023, the company that manufactured Azedra announced it was taking the medication off the market. This episode covers all you need to know about pheochromocytomas and paragangliomas.
NET Experts in this episode:Bonnie Bennett
Nurse Coordinator for the Neuroendocrine Tumor program
University of Pennsylvania
Dr. Lauren Fishbein
Endocrinologist
UCHealth and the University of Colorado School of Medicine
Samantha Greenberg
Genetic Counselor and Paraganglioma Clinic Manager
Huntsman Cancer Institute
Dr. Joseph Dillon
Endocrinologist
University of Iowa
Dr. Erik Mittra
Chief of Nuclear Medicine and Molecular Imaging
Oregon Health and Science University
Dr. Nancy Perrier
Head of Surgical Endocrinology
MD Anderson Cancer Center
Dr. Nancy Sharma
Medical Oncologist
Swedish Cancer Institute
To download a transcript of this episode, click hereSpecial thanks to our sponsors for their support of this episode:The post NETWise Episode 32: Pheos & Paras (updated episode) appeared first on NETRF.
Research is at the very core of what we do at NETRF. We believe it is the key to discovering cures and more effective treatments for neuroendocrine cancers. In this episode of NETWise, we share some of the most important developments in NET research that happened in 2023, and look back on the progress made in the past year. Lastly, we’ll look ahead to new developments on the horizon.
NET experts in this episode:Dawn E. Quelle, PhD., is co- chair of NETRF’s Board of Scientific Advisors. She is a professor of Neuroscience and Pharmacology and leader of the Cancer Genes and Pathways Program at Holden Comprehensive Cancer Center at the University of Iowa Carver College of Medicine.
Pamela L. Kunz, MD is an associate professor of Internal Medicine, director of the Center for Gastrointestinal Cancers at Smilow Cancer Hospital and Yale Cancer Center, Chief, GI Medical Oncology and Vice Chief, Diversity, Equity, and Inclusion for Medical Oncology.
Anna Greene, PhD., is NETRF’s director of research
Click here to download a transcript of this episodeThank you to our sponsors for their support of this episode: The post NETWise Episode 31: 2023 Year in Review appeared first on NETRF.
If you’re dealing with NETs, you likely have encountered fatigue in various forms. The spectrum of fatigue spans from temporary and inconvenient to persistent and debilitating. It can be a source of frustration, stress, and, at times, a feeling of isolation, as it may not be readily apparent to others. Despite its prevalence, fatigue often takes a backseat to the primary cancer concerns. However, delving into the distinct causes of fatigue affecting NET patients and exploring effective strategies to manage it can prove beneficial. In this installment of NETWise, our focus shifts to the often-overlooked aspect of fatigue.
NET Experts in this episode:
Claire Mulvey, MD is a thoracic medical oncologist at the University of California in San Francisco. She specializes in lung neuroendocrine cancers. Mulvey’s research centers on developing new treatments for lung neuroendocrine tumors as well as on improving outcomes and quality of life for patients with these cancers.
Scott Paulson, MD, serves as the co-director of the Gastrointestinal Research Program for The US Oncology Network, as well as the medical director for the Neuroendocrine Research and Treatment Center at Baylor Charles A. Sammons Cancer Center.
Amanda Phipps, PHD, MPH is an associate professor of epidemiology at the University of Washington and the Fred Hutchinson Cancer Center. Her research focuses on how different lifestyle factors impact patient survival among those with cancer.
Jaspal Singh, MD, MHS is the medical director for Innovation and Quality Improvement for Pulmonary Oncology at Atrium Health Levine Cancer Institute and the medical director for Critical Care Practice and Education at the Jan & Ed Brown Center for Pulmonary Medicine at the Levine Cancer Institute at Atrium Health and Wake Forest School of Medicine.
Very special thanks to Beth Leonard and Carrie Camino for sharing their NET story in this episode.
Click here to download a transcript of this episodeClick below to take the LACNETs Quiz for this episodeSpecial thanks to our sponsors for their support of this podcast.
The post NETWise Episode 30: Understanding Fatigue & NETs appeared first on NETRF.
One of the things that sets neuroendocrine tumors apart from other kinds of cancer is that they can occur almost anywhere in the body. Those different locations — or primary sites — can mean the NET takes on different characteristics, and requires different kinds of treatment. In previous episodes of this show, we’ve talked about lung NETs, pancreatic NETs, small bowel NETs, and gynecological NETs. Today, we’re going to be talking about skin NETs. These are known as Merkel cell carcinomas. Merkel cell carcinoma can be challenging to diagnose and treat, making early detection and medical attention crucial.
Dr. Ann Silk is a medical oncologist at Dana-Farber Cancer Institute, where she co-directs the Merkel Cell Carcinoma Center for Excellence.
Dr. Manisha Thakuria is a dermatologist who works at Brigham and Women’s Hospital and Dana-Farber Cancer Institute. She co-directs their Merkel Cell Carcinoma Center.
Dr. Paul Nghiem is Director, Skin Oncology Clinical Program, the Fred Hutchinson Cancer Center at the University of Washington. He runs a research lab there and takes care of patients with Merkel cell carcinoma.
A special thank you to Leon Igras and Stewart Landers for sharing their NET stories.
Special thanks to our sponsors for their support of this podcast.
Download the episode transcript hereAfter you listen to the episode, test your knowledge by taking the LACNETS quiz here. The post NETWise Episode 29: Merkel Cell Carcinoma appeared first on NETRF.
In this episode, we’re talking in depth about one of the most exciting and widely discussed treatments for NETs: PRRT.
This is a revised version of an episode that originally released in 2020. A lot has happened since then in the development of nuclear medicine treatments like PRRT, and we’re excited to bring you information that is updated and current. A special thank you to Dr. Courtney Lawhn Heath, a nuclear radiologist at the University of California, San Francisco for helping to update this NETWise episode.
This NETWise podcast discusses Peptide Receptor Radionuclide Therapy (PRRT) a targeted form of radiotherapy approved in the U.S. in 2018. Listen in as NET experts Josh Mailman, Drs. George Fisher, Thor Halfdanarson, Ed Wolin, Richard Baum, and others explain what it is, how it works, and who is most likely to benefit from PRRT. This therapy relies on a tumor’s expression of somatostatin receptors. We explain what they are and how to know if you have them.
We take an objective look at the success rates for this therapy. What does research, like the NETTER-1 study, tell us about outcomes for this form of treatment? To give you information about both the pros and cons of PRRT, we will also discuss the potential side effects, from mild to serious. To give you a sense of what it is like to undergo PRRT, we’ll talk with multiple patients about their experience with the procedure itself, as well as the radiation safety precautions patients should take immediately following treatment. Finally, we look to the future asking Drs. Rod Hicks and Tom Hope to explain some of the new therapeutic directions PRRT is taking.
Thank you to our clinical experts for participating in this episode.
- George Fisher, an Oncologist at Stanford University
- Xavier Keutgen is a surgeon at the University of Chicago
- Courtney Lawhn Heath, a nuclear radiologist at the University of California, San Francisco
- Josh Mailman, a NET patient, NETRF board member and advocate who’s a world authority on PRRT for NETs
- Ed Wolin, an Oncologist at Mt. Sinai in New York
- Richard Baum, a nuclear medicine specialist in Germany
- Aman Chauhan, head of the Neuroendocrine Tumor Program at the University of Miami
- Rathan Subramaniam, Executive Dean of the medical school at the University of Notre Dame in Australia
- Karen Ohara, Research Coordinator at Rush University in Chicago
- Blase Polite from the University of Chicago
- Rodney Hicks from the University of Melbourne in Australia
Thank you to Gary Murfin for sharing his story. This episode is dedicated to the memory of Marilyn Kline, who passed away during the production of the original episode.
Special thanks to our sponsors for their support of this podcast.
Download the episode transcript hereWhat is PRRT? Download PDF herePRRT for NETs. Download PDF hereThe post NETWise Episode 28: PRRT Revisited appeared first on NETRF.
As of late we hear a lot about the need for diversity and inclusion in health care, and we know there is a need for more diversity in NET clinical trials. In looking at the issue of race and medicine there are four major factors that influence health outcomes and that deserve scientific investigation: First, […]
The post NETWise Episode 27: NETs & Race appeared first on NETRF.
This is a revised version of an episode that originally aired in December of 2020, where we focused on diagnosis and treatment of NETs that start in the most common primary site for neuroendocrine tumors, the small intestine.
A special thank you to Dr. Mark Lewis for his expert knowledge and help with this special NETWise update.
Did you know that 12% of gastrointestinal (GI) NETs are found in the small bowel? The small bowel, or the small intestine, is one of the most common places NETs form. If you are living with a small bowel NET, this episode is for you. In this episode, you will learn more about the anatomy of the GI system and the different parts and functions of the small bowel. You will also learn more about tumor biology and how small bowel NETs can greatly differ from one another. Finally, this episode details how small bowel NETs grow and what disease progression looks like. We will also cover the extensive treatment options available and new research for small bowel NETs in interviews with NET specialists, Dr. Mark Lewis, Dr. Dan Halperin and Neena Vijayvergia.
Special thanks to Quintin Ness for sharing his story.
NET Experts in this episode:
Dr. Mark Lewis, MD: an Oncologist and Director of Gastrointestinal Oncology at Intermountain Healthcare in Utah.
Dr. Dan Halperin, MD an Oncologist and Clinical Investigator and NET specialist at M.D. Anderson Cancer Center at the University of Texas.
Dr. Neena Vijayvergia, MD, FACP: an Oncologist and Associate Professor of Hematology and Oncology and Assistant Chief of GI Medical Oncology at Fox Chase Cancer Center in Philadelphia.
Read a transcript of this episode here.
The post NETWise Episode 25: Small Bowel NETs appeared first on NETRF.
https://netrf.org/wp-content/uploads/2023/03/NETWise-EP-24-Ready5-JB.mp3The post Episode 24: Gynecological NETs appeared first on NETRF.
As we end our mini-series about adjusting to the new normal of your life with NETs, we wanted to take an episode to highlight one of the most emotionally challenging situations that might confront a person who is newly diagnosed — learning you have cancer while you are raising children.
Parenting is already one of the most challenging and emotionally fraught things anyone can do, and then adding a serious illness on top of it can be downright overwhelming. If this is the situation you find yourself in, we hope this episode will help you to find the strategies and encouragement you need so you can take best care of yourself while also being present and supportive for your children.
NET Experts in this episode: Mark Lewis, MD, NET patient and Director of Gastrointestinal Oncology, Intermountain Health
Lindsey Nowacki, LCSW, a Clinical Social Worker with AuthoraCare, a palliative care services provider in North Carolina. She supervises the counseling services at Kid’s Path, a program that works with children dealing with and loss.
The post Episode 23: Parenting with NETs appeared first on NETRF.
In the last episode of NETWise, we talked about a moment of transition – the time right after someone receives a diagnosis of NETs and the feelings of grief that can follow. This episode discusses the next part of the journey- how to navigate through the emotions, symptoms, and treatments of NETs while one continues to manage life responsibilities and relationships while living with NETs. This episode addresses survivorship and how one starts to navigate their new normal.
NET experts featured in this episode:Use our episode infographics to get a visual picture of some of the things we have discussed.John Kerns
Interfaith chaplain
Beth Israel Deaconess Hospital in Plymouth, Massachusetts
Greg Johnson
Interfaith chaplain who serves as Chief Advisor for Family Caregiving
Emblem Health
Dr. Chandana Banerjee
Hospice and palliative care physician
City of Hope National Medical Center in suburban Los Angeles
Michael Lister
Clinical nurse with the outpatient Oncology group
University of California, San Francisco
The post Episode 22: Navigating The New Normal appeared first on NETRF.
This is something special for NETWise. This is the pilot episode of a new project we’ve begun, translating the NETWisew series into Spanish! We’ve started with the very first episode of the show, from back in August of 2019, which lays out the most basic and foundational information about what NETs are and how they work. If we’re able to do more of these, and we hope to, it will move to its own podcast feed to be a resource for a whole new segment of the NET community. For now, please share this with Spanish-language speakers who would find it valuable, and we’ll be back next month with a brand-new episode of the series in English.
The post NETs 101: En Español: Lo que necesitas saber appeared first on NETRF.
A NET cancer diagnosis can affect the emotional health of patients, families, and caregivers. In this episode, we’re going to do something a little different. We have spent a lot of time in this series talking about the science of NETs, but a NET cancer journey is not just about biology. The NET journey can […]
The post Episode 21: Adjusting to the New Normal appeared first on NETRF.
Episode 20 is part two of our deeper understanding into NET research. Advancing NET research is the core of our mission at NETRF, and it’s a crucial need. This episode of NETWise will take a closer look at how scientists do the research that we hope will yield the next generation of effective treatments for […]
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Episode 19 is the first of two episodes that will discuss a topic near and dear to us here at NETRF: NET research. Advancing NET research is the core of our mission, and it’s a crucial need, because NETs are extremely complicated cancers and there is still a lot the medical community needs to learn […]
The post Episode 19: NET Research—Part One appeared first on NETRF.
While most neuroendocrine tumors are low-grade and slow growing, there are some that are high-grade and very aggressive. These high-grade NETs and NECs are treated very differently. In the newest episode of NETWise, we turn the spotlight on high-grade NETs, talk with NET physicians about the treatment challenges, and hear from a patient and caregiver about dealing with the diagnosis.
The post Episode 18: High-Grade NETs and NECs appeared first on NETRF.
Very often, the liver is the first and most significant site of NET metastasis, and for many people, managing the disease in their liver becomes the most challenging part of their NET journey. In this episode of NETWise, we’re going to focus on an organ that is almost never a NET primary site, but nevertheless is crucially important to many people with NETs: the liver.
The post Episode 17: Focus on Liver NETs appeared first on NETRF.
In this episode of NETWise, we’re going to look at all the ways that NETs interact with nutrition–how having a NET can affect your body’s ability to use nutrients properly, and how what you choose to eat can help or hurt your NET treatment and quality of life.
The post Episode 16: NETs and Nutrition appeared first on NETRF.
When you're fighting cancer, treating your tumors is only part of the care you need to continue living your best life. Caring for you as a person - mind, body, and spirit - is the focus of a dedicated team of interdisciplinary professionals who have a lot to offer people with neuroendocrine tumors. Just don't be scared of the "P" word!
The post Episode 15: Supportive Care for the Mind, Body, and Soul appeared first on NETRF.
Pheochromocytomas and paragangliomas are rare neuroendocrine tumors that occur inside or outside the adrenal glands. Affecting approximately 1 in 3,000 people, pheochromocytomas and paragangliomas are unique tumors in that they can produce excessive amounts of “fight or flight” hormones that can cause over 100 different signs and symptoms. The symptoms can come and go and […]
The post Episode 14: Pheos and Paras — NETs Known as “the Great Mimic” appeared first on NETRF.
What role do genetics play in neuroendocrine tumors? Is genetic screening right for you? In this episode of NETWise, we’ll explore the role DNA plays in NETS and why your genetic code might hold important implications for treatment strategies and the health of family members.
The post Episode 13: NETs and Genetic Screening appeared first on NETRF.
Caregivers Share the Burden of a NET Diagnosis A diagnosis of neuroendocrine cancer impacts the person who receives the diagnosis, as well as those they love. A spouse, child, or friend may take on the role of caregiver—a partner to the patient on the NET journey and advocate for their loved one. It’s a job […]
The post Episode 12: The Importance of Caregivers appeared first on NETRF.
Unique challenges for young people with NETs Facing a diagnosis of neuroendocrine cancer, when you are a teenager or young adult, presents unique medical, social, financial, and even fertility challenges. How do you navigate the healthcare system? Who do you tell about your illness and when? Will you be able to have a career? Can […]
The post Episode 11: AYA (Adolescents and Young Adults) and NETs appeared first on NETRF.
Did you know that there are more treatments for pancreatic NETs (PNETs) than for other types of NETs? While there are more options, treatment for PNETs needs to be individualized since these tumors can vary significantly in stage, grade, and their ability to cause hormonal symptoms. PNETs are complex because the pancreas plays an essential […]
The post Episode 10: Pancreatic NETs appeared first on NETRF.
Did you know that 12% of gastrointestinal (GI) NETs are found in the small bowel? The small bowel, or the small intestine, is one of the most common places NETs form. If you are living with a small bowel NET, this episode is for you. In this episode, you will learn more about the anatomy […]
The post Special Episode: Small Bowel NETs appeared first on NETRF.
Did you know that about 1 in 4 NETs develop in the lungs? Lung NETs are often overlooked, less frequently discussed, and more misunderstood than NETs that begin in the pancreas or GI tract. It can be frustrating for individuals and families living with a lung NET to find useful information or the right health […]
The post Special Episode: Lung NETs appeared first on NETRF.
New Ways to Detect and Treat NETs What are clinical trials? In this episode of NETWise, discover how new ideas in NET detection and treatment are moving from the laboratory to the bedside. You’ll learn about the different stages of research and how promising drug compounds progress through them. You will also learn how clinical […]
The post Episode 7: Clinical Trials appeared first on NETRF.
Using Virtual Appointments to Care for NET Patients In this special episode of NETWise, we learn how COVID-19 is forcing our health care systems to make sweeping operational changes. Amid lockdown and stay-at-home orders, NET specialists are switching to telemedicine visits as a new option. The increased use of telemedicine over the past few months […]
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Functional and Non-Functional NETs This episode is about managing the symptoms of functional NETs. To understand these symptoms, we start by talking about hormones. What role do hormones play in the human body? And what do they have to do with NETs? We’ll help you understand the differences between functional and non-functional NETs. You’ll also […]
The post Episode 6: Managing Symptoms of NETs appeared first on NETRF.
What treatments do oncologists use to slow or stop neuroendocrine tumor growth? What role do newer approaches like targeted therapy or immunotherapy play in treating neuroendocrine cancer? And what drugs can be used to alleviate symptoms caused by hormone-producing tumors?
The post Episode 5: Medical Management of NETs appeared first on NETRF.
In this special episode of NETWise, listen as we talk about COVID-19. As a NET patient, you may have additional risk for serious illness from COVID-19, so we share some tips for avoiding infection, managing your NET treatment, and staying mentally healthy during this challenging time. NETRF CEO, Elyse Gellerman, chatted with Dr. Mark Lewis, […]
The post Special Episode: COVID-19 and NETs – What You Need to Know appeared first on NETRF.
Treating NETs with Nuclear Medicine This episode of NETRF’s NETWise podcast discusses Peptide Receptor Radionuclide Therapy (PRRT) a targeted form of radiotherapy approved in the U.S. in 2018. Listen in as NET experts like Josh Mailman, Drs. George Fisher, Thor Halfdanarson, Ed Wolin, Richard Baum, and others explain what it is, how it works, and […]
The post Episode 4: Nuclear Medicine for NETs: What is PRRT? appeared first on NETRF.
Surgery and Interventional Radiology for NETs are two common treatments for neuroendocrine tumors that can reduce the number and size of NETs as well as reduce some of the symptoms caused by tumors.
The post Episode 3: Surgery and Interventional Radiology for NETs appeared first on NETRF.
Detecting and Monitoring NETs: Listen as NETWise takes you on a journey to diagnose neuroendocrine cancer.
The post Episode 2: Imaging, Testing, and Building a Care Team appeared first on NETRF.
Understanding the Basics of a Neuroendocrine Tumor (NET) Diagnosis: Tune into this episode of NETWise as we define and explain how neuroendocrine cells become neuroendocrine tumors (NETs).
The post Episode 1: What You Need to Know About NETs appeared first on NETRF.