Your Stories: Conquering Cancer: Recent Episodes
Conquer Cancer, the ASCO Foundation | The American Society of Clinical Onco
Your Stories features candid conversations between patients, the people who love them, and the researchers looking for new treatments each day
Disclaimer
The purpose of this podcast is to educate and to inform. The podcast is provided on the understanding that it does not constitute medical or other professional advice or services. It is no substitute for professional care by a doctor or other qualified medical professional and is not intended for use in the diagnosis or treatment of individual conditions. Guests who speak in a podcast express their own opinions, experience and conclusions. Neither Conquer Cancer, the ASCO Foundations, nor any of its affiliates endorses, supports or opposes any particular treatment option or other matter discussed in a podcast. The mention of any product, service, organization, activity or therapy on a podcast should not be construed as an endorsement.
Writer, podcaster, and healthcare advocate Kristin Flanary—or Lady Glaucomflecken as she's known online—first introduced Your Stories host Dr. Mark Lewis to the concept of co-survivorship two years ago. As her husband Will went through two testicular cancer diagnoses and a sudden cardiac arrest, she later realized that she hadn't just supported him through those experiences and challenges—she had shared them with him.
For National Family Caregivers Month, Kristin returns to Your Stories to reflect on her discussion with Dr. Lewis, her feelings on co-survivorship, and the importance of showing up for the loved ones of people with cancer.
Professional snowboarder Kimmy Fasani was still breastfeeding her second child when she found a lump under her armpit. Just days later, she was diagnosed with an aggressive form of breast cancer and found herself preparing for chemotherapy. Having lost both her parents to cancer, it was a terrifying moment for her, but she tried not to let her family history loom over her as she began treatment. Instead, she focused on the lessons learned from years spent tackling mountain peaks—to stay flexible and adaptable when her plans were upended and to find beauty in the adventure even if she hadn't asked for it.
At the time of her diagnosis, Kimmy and her husband Chris were filming a documentary following five years of their lives and careers. As she faced the challenges of chemotherapy, radiation, and a double mastectomy, she opted to keep the cameras rolling, documenting the highs and lows of her treatment with unflinching honesty. As difficult as it could be to show the world her most vulnerable moments, Kimmy came out on the other side inspired and hopeful that she could remind others like her that they aren't facing cancer by themselves.
In this episode of Your Stories, Kimmy speaks with host Dr. Mark Lewis about the power of advocating for herself, leaning on loved ones, and looking towards the future.
When Molly Hones was diagnosed with fibrolamellar cancer for the second time in less than two years, she made two critical decisions. First: She wouldn’t focus on the unknowns of her condition and would focus on the positives instead.
Second, she would give back by participating in research. And so, in June 2023, Molly traveled to the Johns Hopkins Hospital, where oncologist and Conquer Cancer grant recipient Marina Baretti, MD, was running a clinical trial for people with fibrolamellar cancer. “I like to say I’m donating my body to science while I’m still alive,” Molly says. “And how cool is it to see my legacy when I’m still around?”
Which is how she found herself in Baltimore, Maryland, on the day she received an unthinkable phone call: Her husband Grant had passed away at age 45 from a brain aneurysm.
Even faced with such devastating news, Molly remained committed to moving forward with her treatment, connecting with other fibrolamellar patients, and celebrating life whenever she could. Being brave and facing challenges with a smile on her face, she says, is her way of honoring the people she’s lost and the people she’s met through her cancer journey.
In this episode of Your Stories, Molly speaks with host Dr. Mark Lewis about her experience with fibrolamellar cancer, the importance of community when facing a rare cancer, and her hopes of contributing to a world where every person with cancer can live life to the fullest.
As a young person starting over in a new country—one where she didn’t even yet know the language—young Yelena faced no shortage of challenges. But she also found opportunity she believes might not have existed in her native country.
“As an Armenian individual growing up in Azerbaijan, going by my parents’ and my family’s experience, I don’t think I would have had an opportunity to be a physician there,” Dr. Janjigian says. “There was a clear limitation on who got to be a physician, and it’s a prestigious position anywhere in the world. As a relative minority, I wouldn’t have been able to do that. My parents certainly had the courage it took to leave and to come to a foreign country.”
That same brand of courage led Dr. Janjigian to her current work as a gastrointestinal medical oncologist at Memorial Sloan Kettering Cancer Center. A specialist in esophageal and stomach cancer, she presented the results of her gastric cancer clinical trial during the plenary session of this year’s ASCO Annual Meeting in Chicago. The presentation was the culmination of more than eight years of work involving nearly 1,000 patients and collaborators. Much of that work, she says, started when she received her first grant from Conquer Cancer, a Young Investigator Award. Receiving that funding, she recalls, was a career-defining moment.
In this episode of Your Stories, Dr. Janjigian speaks with host Dr. Mark Lewis about her journey to become an oncologist, along with her vision for a world where a cancer diagnosis isn’t nearly as frightening as it is today.
These days, there’s no getting around it: In a society that practically lives online, it’s no surprise that two-thirds of people with cancer—and their caregivers—turn to social media to inform their treatment and care decisions.
Perhaps it was inevitable, then, that doctors like thoracic medical oncologist Eric Singhi, MD, would eventually follow suit. After all, what better way to reach and educate patients than by meeting them where they are? And if Dr. Singhi can counteract a little medical misinformation and help people better understand and appreciate the lifesaving impact of science in the process, well, even better.
“When I first began engaging on social media, I was mostly using professional platforms like X (formerly Twitter) and LinkedIn,” Dr. Singhi recalls. As his social media goals grew, however, he gradually expanded to other more personal platforms like TikTok and Instagram. What he found there alarmed him.
“I started seeing all of this misinformation about cancer, especially lung cancer,” he explains. “And it was frustrating. There were people without true medical training ... offering guidance and their thoughts and supplements and all of these things without data or evidence to back it up.”
In a landscape so ripe for misinformation and so impossible to control, Dr. Singhi knew it was impossible to purge or prevent it entirely. “I realized we couldn’t get rid of it,” he says. “What we should do is drown it out with credible experts who do have the training, right?”
And so, that’s exactly what he set out to do.
In this episode of Your Stories, Dr. Singhi—or, as he’s known on various social media platforms, @lungoncdoc—sits down with host Dr. Don Dizon (a social media maven in his own rite) to talk about his mission to make oncology make sense to patients and families, his determination to counter misinformation with genuine knowledge, and how he’s conquering cancer not only through his research, but by building an online community, one post (the occasional dancing doctor video) at a time.
With a rare exception here and there, most scientists will at least complete a college-level science class before making their first cancer research breakthrough. Heman Bekele, on the other hand, is just wrapping up his sophomore year of high school.
By the time he was named Time Magazine’s Kid of the Year in 2024, Heman was already generating buzz in the scientific community. The year before, he’d won the grand prize in the 2023 3M Young Scientist’s Challenge, in which kids compete to think of the most unique solutions to common problems.
His entry? A soap that could potentially be used to treat skin cancer, inspired by his early childhood years in Ethiopia.
“One of the things that really stood out to me was that a lot of people worked really long hours outside in the sun,” says Heman, who first began developing the idea when he was around 11 years old. Over time, he learned more about skin cancer, its prevalence in low- and middle-income countries, and the lack of awareness and treatments for patients in those countries.
“I wanted to take action within the field of skin cancer and make it more affordable to get treatment,” he explains. From there, Heman began a long, slow, trial-and-error process that ultimately led him to soap as a treatment delivery device. “What is the universal product that everyone uses? I landed on soap, which significantly outweighed every other option.”
In this episode of the Your Stories podcast, Heman discusses the story behind his idea for a soap to treat skin cancer, along with the need for affordable skin cancer treatment and the challenges of finding scientific mentors when you’re still too young to get a driver’s license.
It started—as these stories so often do—with fatigue. At first, Jace Yawnick simply chalked it up to a busy life and a job requiring frequent travel. But then he noticed something: There were times the fatigue kicked in when he hadn’t just gotten off a plane or done anything else particularly strenuous. “Intuitively,” Jace says, “something within me just knew something wasn’t right.”
Then came the coughing and the back pain. It would be months—and more than one misdiagnosis—before doctors found the problem: Hodgkin lymphoma. As he processed the news of his diagnosis, Jace realized something: Facing cancer was not something he wanted to do by himself.
And so, when he started to chronicle his cancer experience online, he was simply looking for catharsis and camaraderie. He got both—along with a community of 700,000-plus followers who’ve followed his entire journey in hopes of seeing the moment he fulfilled a cherished goal: to ring the bell and declare himself cancer-free. In this episode, Jace talks to Your Stories host Dr. Mark Lewis about what it’s like to share your cancer journey with thousands of people, the importance of advocating for yourself, and the role of community when it comes to conquering cancer.
The first cancer diagnosis was scary enough.
“I feel like Hollywood actually gets this moment pretty darn right,” Emma says, recalling the day—not long before her 18th birthday—that she learned she had cancer. “The world around you kind of slows down, you get tunnel vision, maybe a little dizzy. The only thing you can really hear is your breathing and your heart rate.”
Eventually—following multiple rounds of chemotherapy—Emma was declared cancer-free. But then came the second diagnosis.
“The key difference between the first and second time is that the first time, you have fear of the unknown. You don't know what's coming for you, and you don’t know what you don’t know,” Emma says. This time, however, she knew all too well. “I did know what was coming for me. I know what I'm going to be facing. And I would argue that that is almost worse. But, if you're gonna relapse, there's only one positive: You know how to do it better this time.”
In this episode of Your Stories, Emma joins her oncologist, Conquer Cancer-funded researcher Dr. Molly Taylor, for a candid discussion about resilience, recovery, and what helped her make a major comeback after facing cancer twice.
Whether you find it on social media, via search engine, or on a popular news website, it often seems like medical misinformation is everywhere, including in the cancer space.
Maybe it’s the claim that sugar causes cancer to spread faster. Maybe it’s someone saying that people with dark skin don’t get skin cancer. Or maybe it’s the conspiracy theory that drug companies and government agencies are withholding the cure for cancer so they can continue to profit from expensive oncology care.
These are just a few examples of purported cancer facts you might encounter online—and none of them are true.
From misinterpreted oncology research to race-related stigmas and myths, the spread of cancer-related misinformation runs rampant, taking an increasing toll on global health and often hampering our efforts at early detection and prevention. In one 2022 study, researchers found harmful misinformation in approximately 32.5 percent of the cancer-related English-language publications they analyzed.
“Unfortunately, what we're frequently seeing in online networks is that the worst-quality information actually receives more engagement than the high-quality information,” says one of the study’s lead authors, Dr. Stacy Loeb, a Conquer Cancer recipient whose spent years researching the consequences of misinformation for patient health. “The structure of online networks can lead to much more rapid and widespread misinformation than we ever would have seen in the past.”
In this episode of Your Stories, Dr. Loeb joins ASCO’s Sybil Green to discuss the rise of misinformation online, its impact on the cancer landscape, and how people across the cancer community can help to turn the tide.
While his teenage classmates were getting ready for school, then-13-year-old Sean Swarner was watching the water rise in the shower, his hair clogging the drain.
His first cancer diagnosis—and the subsequent treatment regimen—took an immense toll on his self-image and well-being. That morning in the shower, he remembers, all of the fear and despair overcame him: Sean collapsed to his knees, tears and tap water streaming down his face. “I remember looking at myself in the mirror,” he recalls, “and I couldn’t even recognize who was looking back.”
After a year of treatment, Sean reached remission. But then, two years later—during a follow-up with his oncologist—Sean and his parents received shocking news. His doctor had found a second cancer: an Askin sarcoma, a rare and aggressive tumor in his chest that eventually left him with only one functioning lung. Worse still, Sean’s chances of survival appeared slim.
In the years to follow, Sean became the first cancer survivor to summit Mount Everest, before eventually completing each of the world’s Seven Summits (the highest mountains on each of the seven continents). That includes three attempts on Mount Denali, the tallest mountain in North America and one of the world’s most dangerous—ultimately reaching the summit in 2017. “In my mind,” Sean recalls, “I kind of jokingly thought to myself, ‘If this fool who’s had two cancers and has one lung can climb to the top of the world, that might inspire some people.’”
In this episode of Your Stories, Sean joins host Dr. Mark Lewis to discuss how conquering cancer shaped his life and set him on a course to complete some of the world’s most prized adventuring achievements. He also talks candidly about the motivations behind these achievements and his hope that others will look at his accomplishments and take away a simple message: If a guy with one lung can do it, so can you.
For patients with cancer, the holiday season can be particularly difficult: How is anyone supposed to prioritize self-care and recovery at a time when much of the world is going on about the joys of giving?
As a breast cancer survivor and a career fashion and beauty publicist, Melissa Berry is all too familiar with that challenge, along with the massive toll cancer can have on a person’s self-image. Enter Cancer Fashionista, a platform she’s built to help patients and survivors navigate cancer without sacrificing their self-confidence, self-worth, and self-empowerment. In this episode of Your Stories, Melissa shares her story—including how she turned her cancer journey into a brand and a platform that reaches thousands of patients and survivors every day.
Caitlin Murray has mastered turning life’s setbacks into something that brings joy to the 1.5 million people around the world who follow her Instagram page. When her 3-year-old son, Calum, was diagnosed with leukemia in 2016, Caitlin and her family’s lives were quickly filled with doctor visits, grueling treatments, and endless uncertainty.
Soon after Calum’s devastating diagnosis, Caitlin launched her blog, Big Time Adulting, to help keep her family informed and to cope with the challenges of parenting a child with cancer. However, Caitlin’s unique style of humor ultimately amassed an enormous audience. Today, with Calum in remission, Big Time Adulting serves as a multimedia outlet where Caitlin writes and shares about life, love, parenting, and the many ups and downs along the way.
In this episode of the Your Stories podcast, Caitlin discusses how maintaining a sense of humor can be a powerful antidote to the unforeseen obstacles that life can bring. She also reflects on the impact of practicing gratitude, including why it matters to raise support for cancer research.
Every 14 seconds, someone is diagnosed with breast cancer, making it one of the most frequently diagnosed cancers in the world, second only to lung cancer, and the leading cause of cancer-related death among women globally. And, while a cancer diagnosis can be devastating for anyone of any age or gender, one group faces a particularly unique and complex set of challenges: young working mothers.
It’s a reality that Irish patient Aisling O’Brien knows all too well. Aisling spent most of 2023 undergoing numerous rounds of treatment—including breast-conserving surgery right before the winter holidays—all while parenting three young children.
“I'm slowly getting back to what is now my new normal,” says Aisling, now that she’s through treatment and cancer-free. “It's given me a lot of perspective. I don't sweat the small stuff. I don't get nervous about things anymore, because what's the worst that could happen? It's shown me that I have a strength that I never knew I had.”
It helped that Aisling had a medical oncologist who was there to support her and her family every step of the way: Dr. Michaela Higgins. A two-time Conquer Cancer grant recipient based at St. Vincent’s University Hospital in Dublin, Ireland, Dr. Higgins has led numerous clinical trials for patients with breast cancer, helping to advance new treatments and cures.
In this Your Stories episode, Aisling and Dr. Higgins join host Dr. Mark Lewis for a conversation about the many challenges that come with balancing motherhood and breast cancer, along with the promising future of breast cancer research and care.
Prom. Graduation. College. These are just a few rites of passage that high school seniors everywhere look forward to. But for Auburn, a devastating turn of events tilted her entire world off its axis and put all her senior year plans on hold. At just 18 years old, she was diagnosed with Hodgkin lymphoma, a type of blood cancer. Instead of graduating with her classmates and going to senior prom, Auburn endured numerous rounds of lymphoma treatment, which is notorious for being incredibly taxing, especially for younger patients.
Fortunately, one of Auburn’s providers, Dr. Raymond Mailhot, is uniquely qualified to help patients find the best and least traumatic course of care. A two-time Conquer Cancer-funded award recipient, Dr. Mailhot focuses on improving radiation oncology for younger patients in the U.S. and in Latin American countries. With his Conquer Cancer funding, he’s determined to improve radiation treatment options for pediatric patients—research that has helped inform his approach to Auburn’s care.
In this Your Stories episode, Auburn and Dr. Mailhot have a heartfelt exchange about the many difficulties that cancer brings, especially for younger patients. Together, they reflect on Dr. Mailhot’s thoughtful approach to providing care for Auburn and the ways that Auburn has persevered to carve a promising path for her life.
Gabriele “Gabe” Grunewald was a professional distance runner and a relentless optimist.
She competed in Big Ten Championship races, became an NCAA track and field All-American athlete, and finished 4th in the 2012 U.S. Olympic Trials. Such accomplishments become even more impressive when you learn that—even as she racked up accolades and wins—Gabe also faced cancer numerous times.
In 2009, Gabe was diagnosed with a rare type of cancer called adenoid cystic carcinoma (ACC). Then, in 2010, she was diagnosed with thyroid cancer. Despite these circumstances, Gabe persevered, continuing to train and run professionally. She also became a rare cancer advocate, launching the Brave Like Gabe Foundation to encourage other patients and survivors to embrace their own courage and chase their dreams.
In June 2019, after a decade of living with ACC, Gabe passed away at her home in Minneapolis surrounded by loved ones—including her husband, Dr. Justin Grunewald. An ultra-marathon runner himself, Dr. Grunewald is also an internal medicine specialist and chair of the Brave Like Gabe Foundation’s Rare Cancer Research Working Group. He joins the Your Stories podcast to share more about Gabe’s story and legacy, along with the importance of supporting rare cancer research so that patients with these rare diseases have more hope for better outcomes.
Whether you’re relaxing on the beach, taking a hike in nature, or hitting your favorite water park, we’ve heard it time and time again: Excess sun exposure increases the risk of skin cancer, so protect your skin and apply your sunscreen.
Of course, while some skin cancer risk factors are unavoidable, we all know there are proactive, preventive steps we can take—like applying sunscreen and limiting sun exposure—to decrease our risk. But what if you could do something that not only protects yourself from skin cancer, but also people around the world? Although numerous milestones have been made in skin cancer research and treatment, there remains significant room for improvement when it comes to treatment and care.
Dr. Lynn Schuchter is director of the Tara Miller Melanoma Center at Penn Medicine and a former president of the American Society of Clinical Oncology, or ASCO, for short. Having dedicated her career to caring for patients with skin cancers, Dr. Schuchter knows all too well how much progress still needs to be made in the field of skin cancer research and care. Today, Dr. Schuchter joins the Your Stories podcast to talk about the importance of prevention, patient-centered care, and the past, present, and future of skin cancer research and treatment.
For Dr. Kekoa Taparra, cancer is deeply personal. Growing up in a remote area of Oahu, Hawaii, Dr. Taparra witnessed his younger cousin’s struggles with neuroblastoma. He watched his mother lift and carry his aunt, too weak to walk because of breast cancer. He heard the sharp cries of another aunt suffering with endometrial cancer. These early experiences drove Dr. Taparra to not only dedicate his career to oncology and cancer research, but to focus on addressing the various inequities that face Native Hawaiian and Other Pacific Islander (NHPI) communities—from low rates of inclusion in clinical trials to geographic barriers to cancer care.
In 2023, Dr. Taparra received the inaugural Dr. Judith and Alan Kaur Endowed Young Investigator Award through Conquer Cancer, the ASCO Foundation. With this support, he launched a research project that uses machine learning to explore the various drivers of NHPI cancer disparities and helps categorize NHPI cancer data more effectively. He joins Your Stories host Dr. Don Dizon to share more about this important work and how his upbringing fueled his dedication to conquering cancer for every patient.
Not only does cancer predate the practice of medicine, but it may also predate the human species entirely. In 2016, archeologists in South Africa unearthed a large 1.7 million years-old bone fragment, ultimately revealed to be the toe bone of an ancient but unknown species of human dating back millennia. On that piece of bone, they discovered something else: a malignant tumor. It’s a stark reminder that, for as long as their profession has existed, oncologists have been studying and treating cancer. For many, it raises a frustrating question: After so many centuries of studying cancer, why haven’t we cured it yet? The answer is complicated.
Dr. Otis Brawley joins the Your Stories podcast to help us better understand what makes cancer such a complex and persistent adversary. In addition to being a professor of oncology at the Johns Hopkins University and a former chief medical and scientific officer of the American Cancer Society, Dr. Brawley is a member of Conquer Cancer’s Board of Directors and editor of The Cancer History Project, a free online resource dedicated to documenting the history of cancer in medicine. He talks with host Dr. Mark Lewis about why cancer has not yet been “cured” and about how our study and understanding of it has evolved over time.
What do esophageal cancer, testicular cancer, lung cancer, cervical cancer, and colon cancer have in common? Each carries some type of stigma or taboo—whether because they’re linked to behavioral causes or because they affect portions of the anatomy traditionally deemed private. The impact of these stigmas can be detrimental: In some cases, stigmatized cancers receive less research funding, resulting in fewer treatment innovations for patients. Moreover, stigmas often result in patients hesitating to seek critical diagnostic care, increasing the risk that their cancer won’t be caught until it’s too late.
April is National Cancer Control Month, which aims to cut the U.S. cancer death rate in half by 2028. Although better cancer screening is a vital step toward that goal, many people do not get screened—a structural problem made worse by cancer stigmatization.
In this episode of the Your Stories podcast, we’re joined by Dr. Stacy Wentworth, an award-winning oncologist and cancer survivorship expert. As medical director of cancer survivorship at Atrium Wake Forest Baptist Health Comprehensive Cancer Center, she has two decades of experience with leading patient-centered care teams in diverse settings. Dr. Wentworth is also the founder of her weekly Substack, Cancer Culture. In this forum, she explores how personal, scientific, and sociocultural factors shape attitudes toward cancer, including the various stigmas and difficult conversations that may come with it.
Imagine receiving a cancer diagnosis, only to immediately learn that not only has it spread to other parts of your body, but it’s also incredibly rare for it do so—so rare, in fact, that little to no research exists to inform your treatment. Katie Coleman doesn’t need to imagine this: She’s lived it. In December 2020, at just 29 years old, Katie was diagnosed with metastatic oncocytoma, a type of kidney cancer so rare that fewer than 10 cases have been recorded in history. Consequently, it’s also remained largely understudied, underfunded, and overlooked in cancer research. Luckily, Katie found Dr. Pavlos Msaouel, an oncologist and a three-time Conquer Cancer grant and award recipient with an incredibly niche research focus: targeting rare kidney tumors.
Despite a lack of research about Katie’s specific type of tumor, Dr. Msaouel’s experience with targeting rare kidney tumors—informed by his Conquer Cancer-funded research—enabled her care team to hone in on an approach that ultimately left her with no evidence of disease.
Now a cancer survivor and patient advocate, Katie has made it her mission to share her story and help others learn to more effectively navigate cancer care. In this episode of Your Stories, Katie speaks with podcast host and fellow survivor Brenda Brody about what she found most helpful during her cancer experience and the empowering impact of shared decision-making between providers and patients.
Henrietta Lacks: Her name is forever intertwined with Black history and medicine. Her cells are the source of the world’s first immortalized human cell line. Without her consent, her biological material was used to make groundbreaking advancements in research in a wide range of conditions and diseases, including AIDS and polio to radiation treatment and cancer care. More than 70 years have gone by since Henrietta Lacks passed away from ovarian cancer at age 31. And yet, today, the Lacks story remains just as relevant for Black patients in the U.S. and around the globe.
In this episode of Your Stories, we’re joined by Dr. Clyde Yancy, a member of the Henrietta Lacks Foundation Board of Directors and a professor of medicine and vice dean for diversity, equity, and inclusion at Northwestern University. Dr. Yancy provides unique insights into Lack's unforgettable place in history, the implications for building and maintaining trust in modern medicine, and what can be done to foster equity and representation for Black patients in cancer research. Together with host Dr. Don Dizon, he also unpacks the importance of diversifying the medical workforce and why it matters for Black patients and patients of color to see themselves in their providers.
Long before he was a world-renowned neurosurgeon, Dr. Alfredo Quiñones-Hinojosa was a 5-year-old boy selling food at gas stations in his native Mexico. But he wanted to dream bigger: At 19, he left his native Mexico in hopes of a better future. Despite speaking little English and having no money, he felt it was his chance at better supporting his loved ones. He was right.
After two years of working manual labor, he decided to build a better future for himself, ultimately earning a scholarship to the University of California Berkeley. Next, he applied and was accepted to Harvard Medical School. After earning his medical degree, Dr. Quiñones began his career as a neurosurgeon in 2005 at The Johns Hopkins Hospital. He subsequently received a Conquer Cancer grant to help advance research for patients with brain tumors and other neurological cancers.
In this Your Stories episode, Dr. Quiñones tells host Dr. Don Dizon about the challenges he faced on the path to becoming a physician-scientist. He also discusses the inspiration he derives from providing care for patients, how his grandmother influenced his career path, and the role that philanthropy has in building the next generation of cancer researchers.
Athlete, professional climber, reality show participant, competitor, physician, and cancer survivor: Favia Dubyk embodies the definition of conqueror. But facing advanced-stage lymphoma during her second year of medical school caused a major setback in Favia’s athletic life. Surgical treatment and chemotherapy had devastating effects on her identity as an expert rock climber: She had gone from ascending boulders to struggling just to open her fridge. It took Favia years of dedicated training to reach and surpass her baseline level of fitness. Even today, as an alum of extreme sports competition shows like NBC's American Ninja Warrior and USA's Race to Survive Alaska, Favia continues to feel the effects of conquering late-stage lymphoma and grueling cancer treatments.
In this episode of Your Stories, Favia tells Dr. Mark Lewis – who also received a cancer diagnosis while in medical training – about the experience of surviving cancer as a professional athlete. She encourages oncology providers to better understand their patients' aspirations in life and tailor treatment plans based on those goals. Favia also discusses what kinds of emotional support she found most helpful during treatment, what drives her as a cancer pathologist to help patients make sense of their medical results, and why it matters for people conquering cancer to appreciate the little things in life.
By the time internet-comedy power-couple Kristin (“Lady Glaucomflecken”) and Will Flanary (“Dr. Glaucomflecken”) were 35, Will had survived cancer twice, along with a sudden cardiac arrest. Throughout these traumatic experiences, Kristin took on the role of caregiver. In at least one case, she was also his lifeline.
Between her experience marrying into medicine, caring for a partner with a life-altering diagnosis, and her background in social psychology and cognitive neuroscience, Kristin brings a unique array of perspectives and insight to the cancer advocacy table.
In this episode of Your Stories, we welcome Kristin back to share more about being a caregiver, the challenges of navigating U.S. healthcare, and why cancer advocacy is so vital.
You’ve seen them: the pink ribbons pinned to your senator’s suit jacket. Runners dressed in head-to-toe pink athletic gear, racing for a cure. Football players streaking down the field in pink cleats.
It wasn’t always like this. Long before people began thinking pink, breast cancer remained fairly stigmatized, a taboo subject only discussed behind the closed doors of a doctor’s office. Today, though, the conversation around breast cancer has reached a level of nearly unrivaled ubiquity, thanks in large part to a huge collective of philanthropists, advocates, physicians, scientists and patients around the world who, more than 30 years ago, decided it was time—perhaps even long past time—for a change.
In this episode of Your Stories, Conquer Cancer’s executive vice chair Dr. Clifford Hudis is joined by Dr. Judy Garber, scientific director of the Breast Cancer Research Foundation, and CNN reporter and two-time breast cancer survivor Athena Jones. Together, they talk about the history behind the advocacy movement for breast cancer, what it is that keeps the conversation going, and what everyone—including those trying to conquer other cancers—can learn from this rise in breast cancer advocacy.
As a little girl, Kenedi loves eating ice cream, drawing stories about her family’s chickens, and playing with her sister. But at age 7, after feeling sick for some time, a cancer diagnosis upended Kenedi’s life.
Despite being the top disease-related cause of death for children, pediatric cancers are still considered rare. As with most rare diseases, childhood cancer receives far less research funding compared with more common cancers. The consequence? Fewer breakthroughs or treatment options for patients. Even so, elevated investment in childhood cancer research has provided a lifeline for kids like Kenedi, ultimately increasing their odds of survival. Funded by a Conquer Cancer grant, her own oncologist, Dr. Wendy Allen-Rhoades, dedicated significant effort to identifying warning signs signaling the presence of sarcoma cells in the body. This donor-supported research resulted in a clinical trial that ultimately — and successfully — informed Kenedi’s treatment. By age 8, Kenedi was in remission.
In our latest Your Stories podcast, Dr. Allen-Rhoades talks to host Brenda Brody about caring for Kenedi, why raising awareness and funds for childhood cancer research is so critical, and how supporting Conquer Cancer helps pediatric oncologists and the children they treat.
Imagine you—or a loved one—receives a cancer diagnosis. Overnight, you find yourself trying to become an oncology expert, desperately looking for information about options. You stumble across a research paper that looks promising—if you could make sense of all the science-speak. Then you find Cancer.Net, the patient information website of Conquer Cancer and the American Society of Clinical Oncology (ASCO). This doctor-approved resource makes cancer terminology easier to digest and offers the latest guidelines on research and treatment.
In this episode of Your Stories, host and cancer survivor Brenda Brody is joined by Dr. Jyoti Patel, a clinical oncologist and the editor-in-chief of Cancer.Net. Together, they unpack some of the year’s biggest research breakthroughs, explain what makes these findings meaningful for patients, and talk about the long-term impact of donor-funded research. They also share why providing cancer information in lay terms is essential to raising awareness and support.
For patients with oral cancers, treatment is often just the beginning of their journey. Even after they emerge cancer-free, many still face a long journey to recovery and restored quality of life
As a maxillofacial surgeon and oncologist, Dr. Chi Viet concentrates heavily on helping her patients to not only conquer this rare cancer, but to more easily and effectively manage their pain along their road to recovery. Using a Conquer Cancer grant, Dr. Viet worked to find epigenetic biomarkers –– or hereditary indicators –– of oral cancer survival, with the goal of personalizing patient care
In this episode of our Your Stories podcast, Dr. Viet speaks with host Dr. Don Dizon about her early career evolution from dentist to cancer surgeon and how her own patients help to advance rare cancer research for current and future patients.
NBC journalist Craig Melvin’s 43-year-old brother, Lawrence Meadows, passed away from colorectal cancer in 2020. Since then, Craig has made it his mission to increase public awareness and raise support for colorectal cancer research. Along with two-time Conquer Cancer grant recipient and colorectal oncologist Dr. Kimmie Ng, Craig joins this episode of our Your Stories podcast to emphasize the critical role donors play in advancing colorectal cancer research. Hosted by Dr. Don Dizon, Craig and Dr. Ng share a candid conversation about the stigmas and misconceptions around colorectal cancer, along with the impact of Dr. Ng’s ongoing research. They also discuss the stark rise of diagnoses in Black patients and young adults, and how donor support is bringing new discoveries to patients.
Support communities for people conquering cancer form a critical bridge between the worlds of social work and oncology and offer immense benefits for people transitioning from patient to survivor. Stephanie Stern, a licensed professional counselor, support group facilitator, and program director at a nonprofit community organization, helps people to more effectively manage the mixed emotions that come with conquering cancer. In this episode of our podcast, Stephanie joins Brenda Brody, a breast cancer survivor and Your Stories host, to share how support communities help people navigate their experiences from diagnosis through treatment and beyond.
At just 19 years old, Anya was diagnosed with Erdheim-Chester disease (ECD), an extremely rare and incurable blood cancer. After three years of unsuccessful treatments, Anya was quickly running out of options. In this episode of our Your Stories podcast, Anya’s mother, Colleen, and one of Anya's oncologists, Conquer Cancer-funded researcher Dr. Jithma Abeykoon, discuss the complexities of uncovering her diagnosis, the disappointment of failed treatments, and the relief and surprise that came when they discovered a new treatment option that finally worked.
For some families, cancer is in their genes. But this didn’t stop Hattie Sherman from conquering it. Hattie is a third-generation survivor of hereditary breast cancer, with her mother, Molly, and grandmother having experienced the diagnosis as well. Fortunately, as cancer research continues to advance, treatments are vastly improving for each generation of patients. In this episode, Hattie, Molly, and Dr. Patt join Your Stories host, Dr. Mark Lewis, for a candid conversation about the intergenerational impact of conquering cancer. They talk about the turbulence and challenges that breast cancer brings and explain why sustained support for cancer research is necessary for advancements in treatment to continue.
In 2022, one of our most popular Your Stories episodes was the conversation featuring Dr. Karen Winkfield, who is a Biden-appointed member of the National Cancer Advisory Board and one of the country’s leading experts in advancing health equity. We are re-releasing this episode to highlight the lasting importance of addressing health disparities and working to eradicate structural racism in cancer research and oncology care. Dr. Winkfield unpacks why cancer risks are higher and survival rates are lower for Black people and discusses the health disparities facing people from disenfranchised communities.
Lillian Kreppel had to advocate for herself and seek a second opinion before receiving a delayed diagnosis: HPV-related stage II anal cancer. During treatment, she found stark limitations in HPV information, including lack of public awareness and patient education, inadequate guidelines for cancer screening, and a lot of HPV-related social stigma. Now a survivor, Lillian leads the HPV Cancers Alliance, an advocacy organization she co-founded to help improve HPV education for patients, providers, and the public. She shares key lessons for patients navigating screening and treatment, debunks stigmas and myths surrounding HPV, and highlights the importance of patient advocacy and donor-funded research.
Less than 1% of patients diagnosed with glioblastoma multiforme (GBM) – the most aggressive type of brain cancer – live longer than a decade. But Molly is one of those rare survivors. Her best friend, Martha, and Martha’s sister, Conquer Cancer board member Dr. Amy Peterson, fiercely supported Molly every step of the way. Molly tells Your Stories host, Dr. Mark Lewis, how she navigated her experiences with cancer. Martha recounts how she supported Molly through her journey. And Dr. Amy Peterson discusses how cancer research informed Molly’s course of care. Together, the trio celebrates the power of leaning on loved ones for support and shares why donor-funded research is vital to advance treatment for all patients.
When Liz Beisel’s late father, Ted Beisel, passed away in 2021 from pancreatic cancer, she partnered with Swim Across America to help fund a Conquer Cancer Young Investigator Award. Dr. Peter Yu, an early-career oncologist and pancreatic cancer researcher, received this grant in 2022. This helped launch his promising research project to improve treatment and care for patients with pancreatic cancer. Liz tells Your Stories host, Dr. Don Dizon, how memories of her dad motivate her to raise vital funds for research, and Dr. Yu shares how and why he works to advance pancreatic cancer care. Together, they reflect on why it matters to accelerate research for every patient.
Dr. Shanu Modi led DESTINY-Breast04, a groundbreaking study that resulted in FDA approval of a promising treatment that can improve survival for nearly 50% of all patients with metastatic breast cancer today. This Conquer Cancer grant recipient talks about the importance of patient participation in clinical trials, the necessity of donor-funded research, and the bright future of breast cancer care.
Helping her Spanish-speaking family communicate with their oncologist inspired Dr. Jenny’s Ruiz’s work in cancer care. This three-time Conquer Cancer grant and award recipient shares how her language-based research aims to improve survival rates for pediatric patients.
At the heart of Dr. Applebaum's neuroblastoma research is a determination to make treatments for kids with cancer easier and more effective. In this conversation with Dr. Yee, the oncologists offer hope on how cancer research is helping patients of all ages.
Even when young patients survive cancer, its challenges often remain with them for the rest of their lives. Carly Flumer survived thyroid cancer in her late 20s and learned invaluable lessons about communication between doctors and patients. Now 32, she is helping other adolescent and young adult patients navigate the unique challenges they face during and after treatment.
Mai Achong was 26 when she was diagnosed with ovarian cancer. Though she survived and her dream of motherhood was fulfilled, the challenges of survival continue to haunt her. From parenting while in treatment to navigating health care systems, Mai shares all the lessons she learned as a patient and a survivor.
Bethany Hart was pregnant when she received a devastating diagnosis. She lost her baby, Hallie, as well as her fertility. Now cancer-free and an advocate for other survivors, Bethany shares how she created the family she’d dreamed about before cancer.
California cyclist Mark Crafts, stunned with a mid-life cancer diagnosis, trusts in cancer research to keep rolling on the most unpredictable ride of his life. He tells Dr. Mark Lewis how, with his support from his Team Crafty family, friends, and cycling crew and an unflinching hope in cancer research, he keeps rolling toward the next big breakthrough.
Jana Hirsch’s mom died from cancer when she was a little girl, so she knows all too well the feelings of pain and loss her 11-year-old daughter, Nika is enduring. Nika's dad, Rico, died from cancer last year. In this Your Stories podcast, Jana offers advice for helping children mourn and Nika shares how helping others keeps her dad’s memory alive.
Dr. Karen Winkfield and Dr. Don Dizon are two of the country’s foremost leaders in advancing health equity. During Black History Month, they offer a very candid discussion on why cancer risks are higher and survival rates are lower for Black people, while addressing the disparities facing all patients from underrepresented, excluded, and disenfranchised communities.
Emmy award-winning journalist Loriana Hernadez-Aldama takes you behind the scenes of her incredible and emotional story surviving leukemia and then breast cancer. Loriana believes being “prehabilitated” helped her take on treatment, and she challenges you to be ready in case you are faced with an unexpected diagnosis or recurrence.
Dr. Nathalie McKenzie is a global caregiver, an innovative scientist, and an advocate for equitable care whose patients celebrate her compassion and determination. She is also a breast cancer survivor who knows firsthand how Cancer Research Saves Lives™.
In the latest Your Stories podcast, meet one of the many researchers Conquer Cancer supports as she shares her thoughts on the greatest needs in cancer care and discusses the ways Conquer Cancer donors are “Making a Difference.”
Kristin and Will Flannery are the First Couple of Comedy. Will – aka @DGlaucomflecken on the internet and comedy stages, aka Dr. Flannery to his optometry patients, and aka Dad to the two kids he shares with Kristin - aka @LadyGlaucomflecken - is a two-time testicular cancer survivor; he also survived cardiac arrest – all before age 35.
Breast cancer survivor Brenda Brody tells Dr. Mark Lewis how she endured the mental anguish of treatment, why she became a mentor, and why she shares her story to help others.
In the latest Your Stories podcast, 12-year-old Cain and his mom, Tawny share with host Dr. Mark Lewis how their family maintains hope and what others can do to help families who are conquering cancer together.
Dr. Lewis, who self-diagnosed his MEN1, understands how patients can feel doubted and judged. Among the ways both Dr. Lewis and Dr. Dizon believe patients can best be served is shed any blame associated with a cancer diagnosis.
Soon after recovering from Hodgkin lymphoma, Lisa Geller’s cancer returned. Then another shocking diagnosis: endometrial cancer.
In the latest Your Stories podcast, Lisa, a teacher, tells host Dr. Don Dizon what she learned when her treatments did not go as she or her doctors expected.
Why representation matters. Why pronouns matter. And why it matters more than ever for patients with cancer from the LGBTQ+ community to be counted and welcomed.
Scout, MA, PhD, executive director of the National LGBT Cancer Network, tells host Dr. Don Dizon why be believes erasing the implicit bias and stigma LGBT patients often face begins with doctors and allies asking the uncomfortable questions and feeling comfortable admitting when they “just don't know what they don't know.”
In the latest Your Stories podcast, Brenda Brody introduces you to fellow co-host Dr. Don Dizon. They talk mental health, sexual health, and the challenges facing LGBTQ+ patients that inspire Dr. Dizon’s work to achieve equity in cancer care.
Childhood friends, both breast cancer survivors, relive the joy and fears of their experiences and share why patients shouldn’t conquer cancer alone.
Steve Cooper tells Brenda Brody how helping other people who have been diagnosed with larynx cancer, he found the will to recover - physically and emotionally - from squamous cell carcinoma.
What did Stacy White do after being diagnosed with breast cancer for the third time? She got a new degree, changed careers, and as she tells host and fellow survivor Brenda Brody, refused to let the disease deter her dreams.
In Follow the Signs, Monique Robinson shares how trusting her instincts, her doctors, and the family supporting her guided her path as she survived breast cancer.
Host Brenda Brody, cancer survivor and advocate, talks to Monique about the challenges of enduring treatment, talking to children about a parents’ diagnosis, and living with the fear of the cancer returning.
Nancy and Alex Berry were shocked when their son, Jake, was diagnosed with testicular cancer during a sports physical. He was only 16.
In this episode of Your Stories, the devoted parents discuss what it’s like to watch your child compete against cancer and share how the experience changed their family forever.
Nancy and Alex Berry were shocked when their son Jake was diagnosed with testicular cancer during a sports physical. He was only 16. In this episode of Your Stories, the devoted parents discuss what it's like to watch your child compete against cancer and share how the experience changed their family forever.
Jake is six feet, 10 inches tall and an incredible athlete. And with his athleticism, he's had a few injuries along the way, two knee surgeries. Jake was about to be cleared to go back to sports after rehabbing from his second knee surgery. So on this day in January of 2018, we went to the orthopedic surgeon and had such joy when we found out he was cleared to go back to sports.
And then we were headed to get his physical. And I was asked to leave the room. I felt like he was in there with the doctor longer than normal. And when I came back in, the doctor said, there's something wrong. He needs to have an ultrasound as soon as possible.
So no one said cancer, but I immediately thought cancer. The next day, I was able to get the ultrasound. And sure enough, the doctor said there appears to be a tumor in the testicle. And we were immediately sent to a urologist where they then confirmed that it was cancer.
The thought of a 16-year-old having testicular cancer was completely foreign to us. Subsequently, as we found out, it really does change your life forever. The key point that I think was important for us is finding the right care.
16 is a difficult age because it almost doesn't fall into pediatric, and it doesn't quite fall into adult cancer. So initially, many doctors wouldn't see him because he was a child. A lot of doctors wouldn't care for him, didn't want to take him on as a patient.
And then we found out about Dr. Lawrence Einhorn who created the cure for testicular cancer. I think in the '70s, it had a 5% survival rate. And after Dr. Einhorn came up with the chemo regimen, it was a 95% survival rate. So of course, we wanted our son to see him.
At first, they said, well, we don't see adolescents. And so we were dismayed thinking about what we were going to do. And so we wrote a note. Or actually, you wrote a note to Dr. Einhorn. And we talked about Jake. And we also talked about not only what we had gone through, but we sent the lab work.
And I'll never forget the morning he called us. He told us that he would take Jake as a patient and that I believe I can save your son. That was a huge moment of relief. And as I've come to know Dr. Einhorn and learn more about him, I think he helps anyone that he can.
The regimen is brutal, and chemotherapy is brutal. And when someone in your family gets cancer, the whole family gets cancer. We brought grandmas and grandpas and support group to the first chemo event the first time he went. And so they put the drug in his arm for the first time. And he literally started shaking. His eyes rolled back in his head, and he got all red. And he was having basically anaphylactic shock.
Sort of an allergic reaction.
And so as a parent, you're thinking, oh, my god. He's not going to take it. He's going to die.
We thought that there was a chance he wouldn't be able to receive the medicine, that he'd be allergic to it was incredibly frightening.
But they do things. They give you Benadryl, and you get through it.
When Jake was going through treatment, he was in a chemo room with many people. And to watch people of all ages and all demographics go through this experience of worrying about if they're going to live or die and also having to try and survive the treatment, which is so harsh itself, was extremely moving and painful to watch. For Jake, as a 16-year-old losing your hair and not being able to go to school and missing out on sports is an incredibly traumatic experience.
Yeah, I think the hardest part for Jake was he felt isolated.
And really, the chemotherapy made him look very sick. He had lost the color in his face. He certainly did not look like himself. And he's just such a vibrant, amazing kid. And there's so many things to be afraid of during the process-- getting sick or basically to survive the treatment. That was so anxiety provoking to watch my son go through it and worry on a daily basis. He got a mild pneumonia. I was constantly worried about infection.
We had 10 weeks to get through chemo. And so I just focused on the end date. And that's what got me through it. The relief of him getting through the chemo and ringing the bell was he made it. He survived this horrible process. And that was such an incredible experience.
Then you're waiting for tests. Did this work? We flew to Indiana, and we met with Dr. Einhorn. And he looked at the scans. And the best news we ever received in our lives was that Dr. Einhorn determined him cancer free.
I think that was definitely the best memory, and then you move on. And I think that it's how you feel after. The little things to us don't matter. And you live each day to the fullest. You hug your kids. You hug your wife, your family. And you just have an appreciation for life that you might have taken for granted before.
It really has changed me personally. I really feel a calling to help people going through this.
In the '70s, somebody stepped up and gave Dr. Einhorn money to continue his research to try something that never been tried before. And it turned a cancer that was a death sentence into one of the most, if not the most, curable cancers on the planet. There's 100 cancers out there that don't have the same prognosis that somebody in some lab is thinking about ways to cure it. And if we can do our little part to help give back and fund that, but others to do the same thing, the research aspect is critically important.
The main reason we got involved is how important research is and how fortunate we feel that testicular cancer has an incredibly high cure rate and how can we not contribute or help these other cancers to become more curable. And so that to me is a passion that I feel strongly about and has changed for me. And seeing your own child go through something like this, it's life changing.
What really surprised you about the experience? I know my answer, but let's see if it's the same.
Well, you go first. What surprised you?
Just the outpouring of support and the community aspect of it. When somebody you love is going through something like this, just a text or a phone call every day, every other day matters. Just to let people know that you're thinking of them, that gave us and me a lot of comfort. And I got that every day.
I don't know that I would say that this surprised me, but maybe what impressed me the most was how incredible Jake is and that he rarely complained and took this so well and was so confident that this would have a positive outcome. We drew strength from him. My hope for the future is that he just has a normal, healthy, happy life and achieves the things that he wants to achieve in his life. And that's all I can ask for.
Today, Jake is cancer free and continues to advance his baseball career as a star member of his team. His parents support research through Conquer Cancer, the ASCO foundation, so other families can face cancer with the same hope they were given. To learn more about the latest cancer research, visit conquer.org.
Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast. And subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories-- Conquering Cancer.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Kimberly Irvine was used to taking care of the people she loved. Conquering breast cancer – twice – forced the young mom to learn how to take care of herself in a whole new way. In a conversation with fellow philanthropist Riccardo Braglia, Kimberly shares how cancer changed her family and offers advice for patients who meet cancer in the prime of their lives.
TRANSCRIPT
PRESENTER 1: Life doesn't stop for months and dads when they hear those dreaded words, "You have cancer." But how do you take care of your family while searching for your own care team, scheduling doctor appointments, and dealing with the side effects of treatment? Kimberly Irvine has some tried and true advice. She was a young mother of two when she conquered breast cancer twice. In this episode of Your Stories, Kimberly talks to her friend and fellow research advocate, Riccardo Braglia, about why it's OK, even necessary, for patients to put themselves first during treatment and offers tips on answering the tough questions children have about cancer.
RICCARDO BRAGLIA: Kimberly, tell me about your story.
KIMBERLY IRVINE: I was initially diagnosed when I was 31 years old. I remember hearing those words, "You have breast cancer," and the first thought was, I knew I was going to have to have to go through surgery. And there's many different options. You can choose to reconstruct, or you can choose not to. And in my situation, it was kind of a wait-and-see approach. I had to reach out and navigate with the physicians, the health care team. I had no idea who those members of my health care team were going to be. I learned very quickly that I was the CEO of that health care team. Of course, they can give recommendations to me, but I was the person that was going to ultimately make those decisions.
I went through surgeries, radiation, chemotherapy, and about three and a half years later the disease came back when I was 35 years old. I then endured more surgeries, chemotherapy, and hormonal therapy. And today I'm happy to say that I'm 42 years old, and I am healthy and very blessed.
RICCARDO BRAGLIA: This journey through cancer-- there is also another issue that patients, and the caregiver, and the family member have to face which is not just relating to the choice of what treatment. But there are many other things to tell your kids. That was a big challenge.
KIMBERLY IRVINE: When I was first diagnosed, my daughter was six, and my son was four. At that age, if they see you lose your hair they think, Mommy's sick. The second diagnosis-- I was 35. They were 10 and eight. Well, life was very different because they started to understand the difference between life and death. I had questions like, hey, am I going to catch this? Did I do something wrong? Is that why Mommy got cancer?
Those are things that I just didn't really know how to answer. I had to educate myself. Now here we are. I'm 42. My daughter is 17. My son is 15, and we're in a completely different paradigm in terms of now their concerns are, gosh, is it going to recur for you? And then the biggest concern is, am I going to get cancer?
I had two situations recently with each of my children. My daughter one day had come into a room, and she was crying. And she said, oh my gosh, mom. I feel this lump in my breast, and I think I have cancer. And I just kind of sit there for a minute. Then I thought to myself, you're 17 years old. How do you even have to think, the first thing is I have cancer?
And we had a doctor check her out, and she was fine, but it just really allowed me to understand that perspective of that fear just doesn't leave them. And then yesterday I was sitting at dinner, and I got a text from my son. And it was the same kind of thing. It was, Mom, I have this bump on my head, and I think I have cancer. So that really does affect our family, and I'm 10 years out from my first diagnosis. And that fear, and that anxiety, and that uncertainty never goes away.
RICCARDO BRAGLIA: The survival patients can be a great example but also a great tutor on what is the journey.
KIMBERLY IRVINE: You really have to be your own best advocate. People don't take the proactive approach of wanting to take care of themselves. That's probably one of the biggest lessons that my kids have had to learn at a young age, that they really have to take care of themselves, and there are things that they can do in terms of lowering their risk.
None of us know if it's going to happen to us, but we can certainly take some control back to what cancer tends to take away from all of us. I tell patients that the way that you can allow yourself to heal is to take that story and really apply it in a way that's positive and funding cancer research.
RICCARDO BRAGLIA: Part of my life is to be involved in research. The result of research is there. Cancer, which was really devastating to all people 20 years ago-- today there are a lot of cancer that are treatable, like yours, and people are surviving. So in the future I see that cancer is becoming more a chronic disease than an acute disease.
KIMBERLY IRVINE: The other piece for me was really about having some of those tougher conversations with children, how to have those conversations in terms of, Mommy, are you going to die? How do you answer a six or a four-year-old child not knowing what the right answer was? The question I get quite often is, how did you parent through cancer? And I'm still facing that.
There's hope. When you have kids, and you're going through a diagnosis, and maybe they're very young, and you're overwhelmed, I want you to have hope because now my kids are 17 and 15, as I said. And my daughter wants a work in health care and really make a difference, and I think that's when it really hit me. It was unfortunate that these kids have had to endure a cancer diagnosis, not once, but twice. But they've learned resilience, and they've learned how to overcome adversity in a really powerful way. And I think that's what's made them who they are.
Everyone asks me, how do you work in oncology? Is it challenging? And I often tell people, oh gosh, it's absolutely challenging. There are some days I go home and bawl my eyes out. I've met so many amazing friends and continue to make friends, and they are literally fighting every single day of their life. I've lost a lot of them.
For me, personally, that survivor's guilt is immense, and I just come back to the reality of, I'm here for a purpose. If I can use my story and I can help educate others, then I can inspire them and help them realize that cancer doesn't have to define you unless you want it to. You can take it.
RICCARDO BRAGLIA: But you should learn from that?
KIMBERLY IRVINE: Absolutely, and I've learned a lot of lessons. I tell my children every day I didn't want the adversity to really break us. I wanted to use it for purpose. My hope is that our stories will, whether you're a patient, a care partner, or somebody within that support community, that you're able to identify how you're going to handle that adversity. And whether that's just pushing yourself to get through one more chemotherapy treatment, or considering a clinical trial, or allowing yourself to talk about your story to somebody else because it will give them hope, and strength, and courage, and the grace to get through it and maybe beyond that ignite a movement to really make a much more impactful difference, leaving a legacy-- I think that's powerful.
PRESENTER 1: Like Riccardo Braglia, Kimberly is using her cancer story to inspire others and invest in cancer research. You can learn more about the latest cancer research at conquer.org. if you need resources on how to navigate cancer, visit cancer.net, which offers physician-approved advice on every type of cancer. It's funded through the generosity of Conquer Cancer donors.
Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast, and subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories, Conquering Cancer.
PRESENTER 2: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
International business leader Riccardo Braglia has experienced great loss from cancer. But the perspective he gained inspires what he gives to help patients everywhere. Riccardo shares his story with ASCO CEO Cliff Hudis, MD, FACP, FASCO.
TRANSCRIPT
PRESENTER 1: When cancer took the life of his best friend, Riccardo Braglia redirected the focus of his international health company to improving treatment for patients with cancer. Then cancer took his mom. Inspired by his mother and the many loved ones he's lost to cancer, he is now a major contributor to cancer research. In this episode of Your Stories, Riccardo talks to his friend and ASCO and Conquer Cancer CEO, Dr. Clifford Hudis, about coping with loss, embracing life's special moments, and what he sees as the future of cancer care.
DR. HUDIS: So Ricardo, we all come to where we are in life from very diverse paths and backgrounds, and we're curious about your childhood, especially given that you grew up in Europe. Can you tell us a little bit about what it was like when you grew up and how that relates to where we are today?
RICCARDO BRAGLIA: Yeah, I grew up in Italy in a small village in the countryside of Milan, and my family has been always involved in the pharmaceutical area because my grandfather started these activities after the war. And so that was part of my DNA.
I remember since I was 14, during the summertime, my father said, you cannot do more than two weeks of holidays. The rest should be working in the company. So I started doing warehousing and moving stuff, and then when I was 16, helping to produce tablets, and then when I was 18, going into the labs to understand some chemical things. And then I went to the university, and then my family decided to sell the Italian company. We got to Switzerland, and there was a start up again. And my father and a couple of other friends started a company from scratch in the 70s, and then I was involved in that.
Then I will into oncology. That is, what is today my company, but also my focus of life was mainly due to two major events. One was the death of my best friend. He died by multiple myeloma. I was shocked not just by the death but by the side effects of the chemotherapy and by all this stuff that is linked to the illness itself and to the therapy. So I refocused my company from anti-inflammatory, and gastrointestinal, and antibody area to oncology.
And the second one has being that my family, unfortunately, is a family that die of cancer. My grandmother, my grandfather, my mother, my two uncle, my aunts, and unfortunately, now my last aunt also has a very bad pancreatic cancer. So my family has definitely been affected by this terrible disease.
DR. HUDIS: Now, I know your mother's death was a particularly difficult one for you, and I'm curious if you can talk a little bit about your relationship with your mother, how close you felt to her.
RICCARDO BRAGLIA: I'm the older boy of a family of two sons, and of course, Mom is Mom. And my father, being an entrepreneur, was always out of the house, especially when I was young, so all my values and education was really linked to my mom. I then went to school, then to university, then starting business, and then creating my family. I married, two sons, too. And of course, the relationship with my mom was a little bit more away. I see her on weekends or on holidays, not in daily life like when you're a kid, which is normal for any families.
Then what happened-- unfortunately, four years ago she get ovarian cancer, and then immediately diagnosed with multiple metastases almost everywhere in her body and was immediately going into palliative care. And she died four months after, but in these four months I dedicated to my mom every single day, in the morning, in the evening, at lunchtime and really recreated this feeling that we had when I was a child.
And this relationship really evolved back again, and we have some very good moments in the morning, waking her up, and trying to get out of the bed, and also spending time, and praying together, and creating our faith again. So in the bad news that she passed away, the good news is that she inspired me to do what I'm doing every day. I'm fighting against cancer.
DR. HUDIS: Every family that experiences cancer probably experiences it in some uniquely different way, different ages, different family members, different kinds of cancer, different journeys, and you've described a bit of that journey. I wonder if there's any aspect of this that you would talk about in terms of the broader impact on your family, not just on you but on your siblings and the other generations around your mother.
RICCARDO BRAGLIA: The first reaction was, we don't have the illness. My mother will survive. Even though it was very clear there was no chance, that was the first reaction. And then the situation was that the family get back together and we trying to create a kind of team to support my mother and my father. So it was a kind of group getting together, and even my two sons at the time were at university, they spent a lot of time coming back and supporting my mom, and staying with her, and talking with her. So it's creating a kind of defense unit around this kind of thing, which I think was a good approach, and everybody was involved a little bit on supporting and creating a team around that.
DR. HUDIS: So it sounds to me, from what you describe, that in some cases a strong family can be both made stronger and have a positive response, but I imagine for many families this is a much bigger stress if they don't have a foundation of strength and connectedness.
RICCARDO BRAGLIA: If you have not a good family background or family strength, that could be a challenge, and especially if you have a family which lives very far away, this could be a very big stress. You need people that give you love and support you through this journey. What I consider very important is to have faith, which doesn't mean to have faith in one specific religion but to have more faith on a spiritual point of view, which helps you to face everyday steps. If you don't have a strong family or a family close by, identify maybe a couple of good friends that could support you through this journey.
DR. HUDIS: I'm curious as a donor, how do you measure that return on investment?
RICCARDO BRAGLIA: Of course, research is a difficult field to have immediately a return on investment, but if you select promising, high-quality researcher [INAUDIBLE] great ideas, this is a really wide possibility of return and having good result. So identifying the best people, and monitor their career, and following their career is probably the best way to have results.
DR. HUDIS: As a supporter philanthropically of research, surely you must have a vision about where you think our field should be headed. What do you think cancer care should look like five years, 10 years, 20 years from now?
RICCARDO BRAGLIA: I think that we have to put the patients in the focus. We have to invest in making, hopefully, one day the cancer-free for every cancer, but in the meanwhile, trying to extend the life of these patients in order that the cancer became more a chronic disease. The second point, I think, is to be focused on quality of life of the patients because sometimes we just get new treatment. We extend maybe one month, two months, or three months the life of patients but with a very terrible quality of life.
So when my mother got ill, whatever months or weeks she will live, to do it as the best as possible, without pain, trying to have good food, waking up, moving a little bit, makeup, and looking nicer because these are small things that throughout the journey of cancer is very important to leave better and to live in good quality. Then if you succeed to be a survivor, it means that you fight the cancer and you get a solution. That is the best things. But if you can't, you have to remember only the quality of life of what you are doing because I think the daily life is made by small things, and these are something that is very helpful through this journey.
DR. HUDIS: That's actually profound, that daily life is made by small things. I'm going to remember that. It was a pleasure talking to you, Riccardo.
RICCARDO BRAGLIA: Thanks a lot. It was a pleasure.
PRESENTER 1: Donors like Ricardo provide the foundation of which breakthroughs, both big and small, are built. You can learn more about the latest cancer research at conquer.org. Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast, and subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories-- Conquering Cancer.
PRESENTER 2: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
In this episode of Your Stories, Dr. Applebaum shares the hopeful news about conquering childhood cancers with fellow oncologist Dr. Douglas Yee and gives doctors’ orders for how all patients with cancer and their families can face every phase of a diagnosis with childlike hopes.
Dr. Mark Applebaum, a kid at heart, uses every trick in the coloring books he shares with his young patients to improve the often long and brutal treatments they face. In this episode of Your Stories, Dr. Applebaum shares hopeful news about conquering childhood cancers with fellow oncologist Dr. Douglas Yee. He gives doctors orders for how all patients with cancer and their families can face every phase of a diagnosis with childlike hopes.
So I'm a medical oncologist. I take care of breast cancer patients. So back when I was in medical school and training, I really wanted to be an all-purpose physician that took care of people. When I was thinking about that I said, well, maybe I would like to be a pediatrician. I went to do my pediatrics rotation.
The thing that didn't work for me was that most of your patients really don't want to see you. In other words, kids either in a well baby check or if they're sick or anything, they don't want to see you, much less talk. So, obviously, it appealed to you.
Yeah, I mean, the reality is I'm a large child. When I was in college, and even in medical school, I just gravitated towards working with kids. It's just more fun. Our rooms are more highly decorated.
I get to watch magicians when I'm on rounds because they happen to be in the child's room. I can't tell you how many art projects I've gotten to watch and participate in just because that's what my patient was doing when I was seeing them. And it keeps you young and it keeps you sprightly.
And the good news is for pediatric oncology, I mean, for the vast majority of children with leukemia, we cure those kids. And that's fantastic. My specialty is not leukemia I do research on a disease called neuroblastoma, which is one of more common pediatric cancers. It's a disease that affects nerve tissue.
And I try to research better cures and try to find different ways of identifying patients who are more likely to have better or worse disease and really figure out how we can precisely treat those kids. So we're working towards those goals.
But kids keep it young and fun. And the pediatric oncologists within pediatrics, we're sort of a special breed because there are a lot of pediatricians who don't want to work with the sick kids. Well child checks are more fun. We deal with the issues of life and death. And that's a struggle, but it's an honor.
I think it's very hard for me early on in my career because I see some success, I see some failure in my research and with my patients. But I don't have that long view. And one of the things I see from my senior colleagues is they love nothing more than hearing from their patients 20 years later. They love nothing more than looking back and saying, this is where things were 20, 30 years ago. This is where they are now. Look at what I've contributed to. What is your perspective on that?
I think on the individual level, it's really always gratifying. And you don't, like you said, sometimes you don't think about a patient's perspective completely. But when a patient will tell me that, well, you know, I never thought I was going to see my child graduate or get married.
And so in some respects that's extraordinarily gratifying on a personal level. But the other aspect is how do you as an individual help make that happen more often than not? And how do you then really try to set the field up so that things are changing a little more rapidly?
As you know, the struggles that my dad has had with advanced prostate cancer, and he is at the phase where he's just running out of options basically. I mean, from that perspective, it's been both fascinating and heart wrenching to interact with the medical oncology community.
I mean, you're at an academic center, and I am as well. And I think the first thing we always think about is, how can I get my patient on a study? How can I find something better than standard of care if standard of care just isn't good enough?
It is always the challenge when there's barriers between what we in the academic world perceive as optimal care and what people are getting. And as somebody who sees a referral practice, I see that a lot.
When we train practitioners, we need to make sure we train them in a way that they're always curious. Now, you don't necessarily have to be a leader in research, but you certainly have to stay on top of things.
So culturally, I think we just need to train more physicians who come with that background. I tell patients and everybody that today's ceiling is tomorrow's floor. If you're practicing at the top of your game today, 5, 10, 2 years from, now it's not going to be that way anymore. So we have to make sure that everybody in the health care system understands that. As you said, pediatrics is a best case example.
I think what we've always benefited from in pediatrics is our patients have to come to an academic center. And we've always had to pool resources because we deal in nothing but rare diseases. The only reason we've made advances is because we have a strong focus on research.
I don't think it's just research that, though, has been a struggle. It's also been supportive care. As my dad has been progressing, his symptoms are becoming more severe. And unfortunately, he's having a harder time mobilizing. And I had to encourage my family to fight to get palliative care services, which to me, in my practice, it's a no-brainer.
If I've got somebody with metastatic disease, like the day they're diagnosed, I call my palliative colleagues, and I say, hey, can you help me with symptom management here? We need to make them do well. But we also need to make sure that they're-- in my case, in pediatrics-- going to school, seeing their friends, acting like children. That's so important.
That's what I was told on day 1 of fellowship. Yes, it's terrifying to start taking care of children with cancer. And you're not trained for it yet. And you're going to be taking the call at the middle of the night from somebody who needs to talk to somebody who knows something about pediatric oncology. But just remember, no matter what you do, if the patient is first, you will not be wrong.
My patient, she's now 10 years old, and she's been battling with high-risk neuroblastoma for a couple of years. And her mom gave a very, very moving speech about everything that she has gone through in the past couple of years. And it's very emotional for me to hear as her physician.
We don't, I think, as doctors always think about what my patient is doing on a day-to-day basis because we think about sort of our patients as a whole. And where is this person in treatment? And what do I need to make sure that this treatment keeps marching on?
But seeing it from that sort of one person's side and all the ups and downs of cancer treatment, and seeing all the pictures and hearing the stories of how their family had to rally through good and bad, it was really quite touching. And it really brought home, I think, the importance of what we do. It was pretty amazing to hear that.
Conquer Cancer funded Dr. Applebaum's early research, which he says helped lay the foundation for every discovery he's made to treat children with neuroblastoma. To learn more about his research, visit conquer.org.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Judith and Alan Kaur know more than most of us about the science of long-lasting love. And they use their unique experiences in the cancer community to advance research.
In this episode of Your Stories, the Kaurs reveal their non-traditional approach to marriage and medicine.
Judith, the first doctor to receive a Conquer Cancer grant more than 35 year ago and Alan, who encouraged his wife to go to med school in the 1970s after they’d started their family, teach us that relationships aren’t unlike clinical trials: If the participants are willing to do the work – to closely study their subjects, accept new information, and course correct when prompted by the heart and the mind - the discoveries can change lives.
Judith and Alan Kauer know more than most about the science of long-lasting love, and each use their unique experiences in the cancer community to advance research. In this episode of Your Stories, the Kauers reveal their non-traditional approach to marriage and medicine.
Judith, the first doctor to receive a Conquer Cancer grant more than 35 years ago, and Alan, who encouraged his wife to go to med school in the 1970s after they'd started their family, teach us that relationships aren't unlike clinical trials. If researchers are willing to do the work, to closely study their subjects, accept new information, and course correct when prompted by the heart and the mind, the discoveries can change lives.
You and I have never had a straightforward 52 years together. I met you when I was still a teenager and I was in college. And we got married after I finished graduate school. You were working as an actuary in downtown Chicago, and we thought, OK, I'm a teacher. You're an actuary. That's our life.
But we changed along the way. I supported you in going into that other profession, even though it meant that we were separated for a period of time. You had to go to New York for training. I was teaching school. And so that was the first time that we were sort of a non-traditional pair.
And then everything went along for a couple of years, and we had our daughter, and then I was a stay-at-home mom. And you were very supportive of my thinking about going back to school. But at the time, I had no money. Nobody in my family was a doctor. But you sort of challenged me to think about doing that. Do you remember a little bit about that time?
I was going into work every day, naturally. And when I came home, she always had a scientific book in front of her that she was reading. It was just going on all the time. And one night, I still remember, we sat down in the kitchen and we each had our food in front of us. And I just looked at her, and I said, do you want to be a doctor? And she said yes. And so that settled the discussion. I remember that clear as a bell.
And I said, then fine. If you want to be a medical doctor, why don't you take tomorrow off, drive down to Northwestern University, where you got your master's degree, and talk to the counselors down there and find out what it would take for you to get into medical school.
Back then, you know, in 1975, when I went to Northwestern, they said I was too old to go to medical school, that women, number one, were not being accepted, and many were told women aren't accepted. Number two, it was better if you go straight from college into medical school.
So over the years, seeing today that it's all different-- actually, probably slightly more women go to medical school than men, and many people do make career changes and pick oncology as an exciting field that has not only patient care, but research and education.
She kept applying, and finally she did get accepted into medical school at the University of North Dakota. And then I took care of our daughter, Christa. You finally got out of your training. At the age of 38, you took on your first real job in medicine.
That's right, after I finished my fellowship. And at the end of my fellowship, I was the first selected Young Investigator Award for ASCO, which led to the Conquer Cancer Foundation efforts to try to support a lot of young and aspiring researchers. They had a small reception for me, and people came up and congratulated me. And among them was an oncologist.
As she was shaking my hand and telling me a little bit about herself, I noticed that she had an unusual mole on her forehead. And I said, you know, I apologize, but that mole looks abnormal to me. Have you shown it to anybody? And she said, oh, I've shown a couple of doctors, and they said, oh, don't worry about that. It's probably been there forever. It's fine.
And I said, you know, I don't think it's fine. I think you should go have it looked at. It actually was melanoma. And so I diagnosed her the day that I got the Young Investigator Award, and I saw her 35 years later. Over the years, you also participated in research and clinical trials. Do you remember the prostate prevention trial that you participated in?
Yes. I went into a prostate prevention trial around the year 2000. And it was the biggest cancer inquiry trial in the United States at that time. And then about three years, I guess, the company sent me out a note saying bring all my medicines in immediately, that all the trials were being ceased.
That's one of the key things about clinical trials and research. We don't just assume that we have the right idea and that every trial is going to work. And built into it is all the safety features so that patients are informed upfront of what we know. And then as things develop, then they inform patients.
And some trials do have to be discontinued. And not every new treatment makes it to market, which is one thing that really is so difficult in this country, is trying to find the drugs that are really going to make the difference and get them to market. And it sometimes takes years because we put patient safety first in our clinical trials.
You actually were responsible for some of your friends even being diagnosed with prostate cancer who went to see if they were eligible for the trial, didn't know that they had prostate cancer, and they were actually diagnosed because of trying to get into the trial. I think that was incredible. And that was a service that you did in talking to other men about the importance of prostate cancer.
My best friend Art, Art tried to get into the trial program that I was in, and they found out he had cancer when he was being examined. And so he could not get into the trial.
That was an incredible kind of serendipity because if it weren't for some of the research that's been done on prostate cancer in the years since then, your best friend, the best man of our wedding, might not be here today. He's got three grandchildren that he never would have seen. We continue to see them when they come down to Florida part of the winter. But all of that would have been lost if it hadn't been for that particular incentive to go and be part of a research project.
It's interesting to see, after 52 years of marriage, the things that we've had together and the times that we've had to change paths. I've been a stay-at-home mom. I've been a schoolteacher. I've been at our own clinic and academic center. So I've seen kind of the full range of oncology care.
And I even got a chance to see you once in a while when you were working all these years. You put in a lot of hours, a lot of work.
I stop in to say hi once in a while, and thank you for all that you've done to make that possible.
Dr. Kauer specializes in breast and cervical cancer and palliative care. She's dedicated her career to preventing and treating cancer in Native Americans. She and Alan donate to Conquer Cancer to ensure the next generation of scientists have the funding they need to explore cancer research. Learn more about the research the Kauers support at conquer.org.
Hearing the experiences of others can help people cope with the challenges cancer brings help others find these inspiring stories by leaving a review of the podcast, and subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories: Conquering Cancer.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Doctor after doctor recommended a different treatment option to Marlene Portnoy’s husband, Steve, after he was diagnosed with a desmoid tumor. Research on the subject seemed out of reach until Marlene met Dr. Mrinal Gounder. Dr. Gounder is an oncologist treating sarcoma patients, and his understanding of desmoid tumors provided the answers they needed. In this episode of Your Stories, Marlene and Dr. Gounder recount how a rare disease brought them together and how their partnership is still improving treatment for patients like Steve.
Doctor after doctor recommended a different treatment option to Marlene Portnoy's husband Steve after he was diagnosed with a desmoid tumor. Research on the subject seemed out of reach, until Marlene met Dr. Mrinal Gounder. Dr. Gounder is an oncologist treating sarcoma patients, and his understanding of desmoid tumors provided the answers they needed. In this episode of Your Stories, Marlene and Dr. Gounder recount how a rare disease brought them together, and how their partnership is still improving treatment for patients like Steve.
It's a very scary thing to be diagnosed with a rare disease. In 2004, Steve had pain in his pelvis. And we were told that it was a hernia. We went to a surgeon. And he said that this is no hernia.
So went and got a biopsy and found out it was actually something called a desmoid tumor, which the incidence rate is two to four per million. So it's really rare.
We traveled to four different institutions around the country, each giving us a different treatment protocol, a different treatment option. And let me tell you, that's a really scary thing when doctors can't agree and don't know how to treat a disease, and don't know that much about the disease. And they all acknowledged that. Then we meet you, our desmoid tumor rock star.
My own experience with desmoid tumors is really one that of serendipity. I really didn't know much about desmoid tumors just 10 years ago. And stumbled into a very interesting case of a young woman who was either 19 or 20 at the time. She was a student at New York University and had been diagnosed with a desmoid tumor. Had a surgical resection. And then the tumor had returned very quickly.
We really started thinking, what else can we do for her? And based on some rational decision making regarding drug activities, and were able to get this drug. And lo and behold, as soon as she took the drug, within days her symptoms got better. And as weeks turned into months, her tumor started shrinking. And she had a remarkable outcome with this drug, which frankly really surprised us.
When we saw that one patient benefited, then we said, well, maybe we should really try this in other patients. We had many desmoid tumor patients who were really struggling through standard chemotherapies, or many for whom chemotherapies had stopped working. And they were living with this disease, really struggling with this disease.
And we decided we want to tell the story in a scientific way to the rest of the world. So we wrote a paper.
I knew of the paper. And I knew the positive results. And when patients would email me with questions of how to treat the disease and nothing seemed to work, I would attach this paper of this promising drug, promising treatment. And say, please bring this to your physicians and let them know about this.
And I'm going to tell you, I did this pretty frequently. And the feedback I got was tremendous. The results were fabulous. I remember thinking, oh my goodness, we have to move forward with this. This is a really important option.
So I remember coming up to you and saying, Mrinal, what are we going to do about this? We've got to do a clinical study.
So at your urging, you know, I really started thinking about what we can do to design a prospective phase III study, where we can really demonstrate the activity of this drug. And demonstrate its activity and, ultimately, bring it for patients use, not just in the United States, but worldwide.
So that process alone took about a year or two. And there were many, many, many roadblocks along that path. But looking back, there were many people who had helped me in that process.
We finally started this clinical trial, a phase III clinical trial, which was run both in the United States, as well as in Canada. One of the concerns, from the very beginning, is how are we going to accrue patients? How are we going to find these patients with these rare cancers?
And how are we going to bring attention to them to this study? And that accrual would be a major problem. In fact, it was one of the major deterrents to this study from the very beginning from people who are well-meaning, but who really worried that accrual would be a problem.
And we had so much, so much interest. I mean, how long did you think the accrual process was going to take?
We were estimating that our study, which only had 87 patients, to take a really long time. But in reality, in partnership with you, we accrued 87 patients in 17 months, which was absolutely astounding. I think the success of completing that trial speaks to the necessity of a partnership, especially in rare diseases, whether it's cancer or non-cancer, in this collaboration between drug companies, between academia, between patient advocacy groups, and even cooperative groups that have the network to conduct these studies. These can't be done in a single institution.
Mrinal, where do you think that we're going to go from here? I mean, it was remarkable. We have this phase III study that was recognized as one the top 10 breakthroughs in oncology in 2018, which you published paper in the New England Journal of Medicine. I mean, it brought so much awareness and recognition to desmoid tumors.
10 years ago, even in my wildest dreams, I think in none of our wildest dreams would have imagined that this study would be so positive, or would be recognized as one of the top 10 advances in 2018. I can tell you my goal has always been to bring this drug to patients so that this can be approved. And insurance companies can pay for this drug, not just in the United States, but really worldwide. I can only hope that this will move in that right direction.
When this study was successful, it really gave confidence to other companies to develop new drugs in this disease. And this is really a model not just in sarcoma, but really in all diseases, whether they're cancerous or not. I think there is a lot of exciting work that's ahead of us. I'm curious to see what the next 10 years will bring.
And you know what, just reach for the stars. Nothing is impossible.
Yeah. Yeah.
I think we've proven that.
Marlene's husband Steve recovered from his desmoid tumor with surgery and radiation. Marlene's experiences advocating for her husband launched the work she does now to ensure desmoid tumor patients have access to breakthrough research from specialists like Conquer Cancer Researcher Dr. Gounder. To support more research like Dr. Gounder's, visit conquer.org and make a donation today.
Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast and subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories conquering cancer.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Life doesn’t stop when devastating things happen. Six-time cancer survivor Brittany Sullivan and her husband, John, know this all too well. Brittany’s first diagnosis came at age 3 and her most recent when she was 15 weeks pregnant. How do a husband and wife keep going when cancer lies in the shadows of their most joyous moments?The Sullivans rest in their faith, the miracles uncovered by modern medicine, and the divine direction of a pink Post-It note to conquer the fears of cancer without losing the hope that sustains their family.
Life doesn't stop when devastating things happen. Six-time cancer survivor Brittany Sullivan and her husband John know this all too well. Brittany's first diagnosis came at age three and her most recent when she was 15 weeks pregnant.
How do a husband and wife keep going when cancer lies in the shadows of their most joyous moments? The Sullivans rest in their faith, the miracles uncovered by modern medicine, and the divine direction of a pink Post-It note to conquer the fears of cancer without losing the hope that sustains their family.
My first diagnosis was right before I turned three years old. I had a tumor on my tongue. I had it removed. Then had several other recurrences when I was 6 and 17, 21.
Yeah. And the one when you were 21 is special to me.
John and I had just started dating. And I had a very small tumor removed from my lung. And so he got to be a part of that recovery. And I saw in him his ability to be a caregiver, his compassion, and his tenderness. And man, that really meant a lot to me after the experiences that I had had in my life. And it spoke love to me in a way that I could understand it.
So let's go back to November of 2012. We found this tumor in my heart while I was 15 weeks pregnant.
Do you remember what we did the night after we came home from Dr. Davis' office? I say came home. We left there.
We didn't want to go home. We weren't ready to. Because we knew we would just go home and cry. And so we--
Which we would get to--
Yeah.
--eventually.
Yeah, we did eventually do that. But we went to a Japanese steak house. Because I was pregnant and I was craving fried rice. And we walked in. And I was crying.
And I went to the bathroom. And there was a Post-It note on the back of the stall that I chose. It was bright neon pink.
And it said the words, "Do not be afraid" appear in the Bible 365 times. And so I started crying some more. Because what a little gift and treasure!
So we made it far enough past when the baby would be viable. Our sweet girl had had time to grow and develop. So at 34 weeks we delivered Carly Jean.
And she was completely healthy. She was teeny, teeny, tiny. But she was great. And she's just been this, like, beam of joy and goodness. And so in a way, that pregnancy saved my life. Otherwise, we wouldn't have known about the tumor in my heart.
But the story really takes another weird twist.
Yes. Went in for an appointment, and Dr. Katie walked in kind of shaky. And she said, I do not have good news for you. It has spread. I want you to go to Miami. Like, it was one sentence.
Just like that.
There was a clinical trial in Miami.
Before we could get on the clinical trial, we needed to have a brain scan done.
And the scan revealed cancer in my brain, so--
Devastating.
Yes. I really did not want to have brain radiation. But when that's the only option, you do it. Life doesn't stop when devastating things happen.
I was teaching during that time every day. So I kept going. I think I was teaching the reproduction system during that time.
Talk about how it felt to see your tumors responding.
After nine months, after my chest, abdomen, and pelvis scans, there is only 5 millimeters of cancer left. And all of the cancer in my brain is either shrinking or gone. It's humbling. It's exciting.
I feel like every time I get good news I do this, like, enormous happy dance in my brain that doesn't always come out of my body, because I'm tired from cancer treatments. But man, it's so exciting.
We never felt alone. We had an amazing community surrounding us. We often felt scared.
Yeah.
But we never felt, like, hopeless. And that's how we've made it, is we've always had hope. And I feel like it is my job to share that.
The Conquer Cancer Foundation's mission is to conquer cancer worldwide by funding breakthrough research and sharing cutting edge knowledge. To learn more about the participants in this session and others like it, please visit Conquer.org/StoryCorps. Recorded and produced by StoryCorps, a national nonprofit whose mission is to preserve and share humanity's stories in order to build connections between people and create a more just and compassionate world. Learn more at StoryCorps.org.
A new house in the suburbs. A thriving business. A growing family. It was a charmed life for college sweethearts Robin and Dave Dubin until Dave was diagnosed with colon cancer at age 29.
Cancer is part of Dave’s family history. Will it be part of his family’s future?
The Dubins talk candidly about the decision to explore genetic testing for their sons and the anxiety that comes with having answers.
A new house in the suburbs, a thriving business, a growing family, it was a charmed life for college sweethearts Robin and Dave Dubin until Dave was diagnosed with colon cancer at age 29. Cancer is part of Dave's family history. Will it be part of his family's future? The Dubin's talk candidly about the decision to explore genetic testing for their sons and the anxiety that comes with having answers.
So you tell me a little bit about what it was like when we met.
So we met as college sweethearts at Tulane University. We were 18.
19, I think.
19? All right.
Just somewhere around there.
We'll go with 19. We were studying and I saw you. And I'm, like, that's the girl I'm going to marry. And I, of course, didn't tell you this until what, how many years later?
Until we were about to get married, you told that story to the cantor that was going to marry us. And that's how I found out about it, seven years later.
Sorry. So we got married. And we were running a business together.
Mhm.
We did the traditional move to the suburbs, buy a house, have a first child. And we sold the business. It was a lot of stress.
So when I started having symptoms at age 29 of colon cancer, it was passed off as stress related because of everything that was happening, even though the whole family history of colon cancer was very well-documented.
Your father and your grandfather were a bit older than you were when they had cancer. So we didn't think too much of it. You had to have surgery--
I did.
--and chemo.
So what was it like watching me go from being a strapping 29-year-old still playing soccer to becoming a patient who can't lift his own son?
You do what needs to get done to get through it.
So you became the proverbial mama grizzly?
Mhm. You were a survivor. You did well. You recovered.
And you know, life kind of got back to normal at that point. And we, over the next seven years, had two more kids. And as a cancer survivor, you actually were five years cancer free.
It was roughly 10 years after the first surgery. I go to donate blood. And essentially, my iron count had dropped like a stone.
And they found a bleeding tumor. And surgery was able to remove it. That's when you went for genetic testing and found out that you carry a mutation and they caused increased risks of different types of cancers.
So what did mama grizzly do this time?
Well, first, you started seeing a high risk oncologist.
I did.
So you now get not just annual colonoscopies, but all kinds of other screenings and scans for other body parts. And a year later, they found a tumor in your kidney.
I was certified defective by that point.
So we really were very fortunate that you were being screened. Because it was a very small tumor.
The surgeon was able to go in the same way they went in previously. And a couple hours later, I come out smelling like roses.
Right. Then our kids get to the ages where they need to have genetic testing. I think that was tougher on me than everything we had to deal with with you.
So our oldest son Zach is now 22. When he was 18, he got genetic testing. And he tested positive. So he had to go for his first colonoscopy at 18. And he's been seeing an oncologist and getting MRIs ever since. He has decided to apply to graduate school to get a master's in genetic counseling.
So he took this setback, if you will, and just turned it into something positive.
We have three boys. And Corey, our middle son, who is 18 now, just had his genetic testing done a couple months ago. And he was negative. It was kind of a surreal experience. I was pretty much preparing myself for another positive result. Zach, who is down at school, he called me the second he was done with class. And he was so relieved that his brother tested negative.
So what does the third one think? Well, he knows, obviously, a lot for a 14-year-old, considering he's been with us for this whole thing. So he's grown up with it. And he sometimes will ask us questions out of the blue about this and what it might mean for him. It's a little sobering to have your 14-year-old ask about cancer.
I think in our case, we would rather he actually did ask the question than not.
Yeah. And we're hearing that there may be vaccines. And it hopefully will change our children's future to the point where they don't have those risks anymore, despite having the genetic mutation.
If there was a crystal ball that said this was going to be the journey 30 years ago, I still wouldn't trade.
Me neither. There's no one else I'd rather go through this life journey with than you.
Families like the Dubins put their hope in the future of science. Conquer Cancer donors have funded nearly 1500 research projects to provide new treatments to patients with every type of cancer. Make a gift at Conquer.org/donate to support the next generation of conquerors.
How does a patient find his voice? Dr. Mark Lewis was one week into his oncology fellowship training when he self-diagnosed his rare cancer. In this episode of Your Stories, Dr. Lewis shares with his friend and colleague, Dr. Jonathan Bleeker, how the many roles he’s played as caregiver, doctor, and patient – help him navigate the cancer community.
How does a patient find his voice? Dr. Mark Lewis was one week into his oncology fellowship training when he self-diagnosed his rare cancer. In this episode of Your Stories, Dr. Lewis shares with his friend and colleague, Dr. Jonathan Bleeker, how the many roles he's played as caregiver, doctor, and patient help him navigate the cancer community.
So John, I'm thrilled to have a conversation with you. In fact, this is our 10th anniversary of a friendship, because I met you right as we were starting our training as oncologists. So I'm always curious, and frankly, as long as I've known you, I don't know your reasons for going into medicine.
When you are introduced to someone, and they ask you what you do for a living, and you tell them you're an oncologist, there's often a pause. There's often a furtive glance and a lack of eye contact. And almost, you can feel the intrinsic sense to say that they're sorry. Because they envision themselves in that role and feel like that's not something would like to do with their lives.
So as I look back, the why for me is twofold. For me, it's a, it's a desire to help people. But when I talked to high schoolers and I talk to folks who are thinking about going into medicine, I say, there's a lot of ways to help people.
Yeah, absolutely.
You can be a counselor, a social worker, a pastor, a yoga instructor. So b, is the science. And you have to love the science. And I'm the kind of kid who asked for a microscope for his 10th birthday, so I could look at the water in the puddles outside my house. And so I was always drawn to that. So I think it's about finding a way to help people and matching it with something that engages you and motivates you. And for me, that's science. So that's why I went into medicine.
We talked about this being our 10-year anniversary, so to speak, of starting fellowship. Certainly, know some of your backstory, your why and your how. Has your outlook on that changed over the past 10 years?
I thought basically my entire boyhood that I was going to go into the ministry. So I was a preacher's son. And not just that, I'm an only child. So this was-- you know, I was it. I was the only potential heir to the throne, if you will.
We moved to America when I was eight. My father's immigration X-rays showed a really large mass in his chest. And one of things we do as oncologists is break bad news. This was the case example of how not to break bad news.
I watched my dad go through treatment, and he died when I was 14 years old. So that's pretty much when I threw myself headlong into saying, OK, I'm going to be an oncologist. I just envisioned cancer as this monolithic foe, and it was like, coming for you.
And what really helped was my father's oncologist took me under his wing. So I was offered the opportunity to work in this clinic, which I'll be honest, at first was a little weird for me, because it was this place where my dad had been treated. But on the plus side, all the people there knew that and were incredibly kind. From there, I decided, well, I want to go into medical school. And so that was sort of the chain that led me to that particular field.
How did your experience with your father and his bad news shape how you present that to your patients today?
So I just-- I guess I just know how impersonal it can be. So basically what happened was we went down to the embassy in London. We lived in Edinburgh, Scotland. We went down to the embassy in London. We did the X-rays, and then we basically just got this sort of call that, oh, you know, your X-ray is abnormal, so you should get that checked out. There was no sense of urgency. And I carry that with me now, because I know a lot of the patients have gotten to my clinic through similar conversations.
In our 10 years of practice, have you felt like your practice has changed during that time?
I think social media has a lot to do with it. As you know, I'm a patient myself. I have multiple endocrine neoplasia type 1. It's a rare cancer syndrome. I found it, I think, maybe the day before I met you.
Which I had no idea at the time this was going on.
Right. So I had had horrible abdominal pain, that-- it goes to show you the folly of self-diagnosis. I thought I had appendicitis. I actually had high calcium. My father had had high calcium. There's only a few things that give you high calcium in successive generations. And that's when everything sort of clicked, and I had my Eureka moment.
And as you also know, I went to the internist, and I told him my concerns. And he quite literally thought I was a hypochondriac. I mean-- and in fairness to him, I went in there hot and heavy, saying, hey, I'm an oncology fellow in my first week, and I think I have a rare tumor syndrome. I mean, I understand--
It's the classic medical student syndrome, where you learn about something, and the next day you wake up in a cold sweat and having-- yes.
So I co-founded a Facebook group for patients with MEN syndromes, because we're very rare. So there's some incidence estimate that MEN1, my disease, probably somewhere around 1 in 30,000 Americans. I didn't know anyone else there that had MEN1.
And what happened, I think providentially, was I met an MEN1 patient who was coming there. And it's a wonderful woman. She's had, at this point, I think almost 30 surgeries between her pancreas and her parathyroids and her pituitary. And I was talking to my endocrinologist, and he said, you know, you really should meet someone. So we were introduced.
And it was fairly early days of Facebook groups, and we founded one. And what I've seen is that patients are more and more self-advocating. My point is, is that there's been this rise of patients having a voice in a manner that-- they had it before, but they didn't have quite the ability to amplify it.
And I was saying to someone yesterday, I sort of feel like social media is the second coming of the Gutenberg press. And if my father was alive-- my father never sent an email. He did not live to see email. He would be absolutely blown away by everything that's happened, not just in the last 10 years, but since 1994.
I think that's also echoed in even folks who are not as savvy in the social media world, which I would say most of my patients are not. Because my patients are elderly, from rural South Dakota, but expectations have changed.
Yeah.
It was not unusual when we started practice when a patient would come in, even with a very early stage cancer, and assume it's the C word. There's not much that can be done. I should sell the farm, quite literally. In 2019, that's not the case. I think that through social media, through the lay press, and to be quite frank, the progress that has been made-- a tremendous amount of progress has been made. Let's not short shrift that.
But now, the expectation is I saw this ad on television, and that's going to work for me. And you're right. We have to tap the brakes sometimes. We've had to change our mindset a little bit as oncologists. It's a tightrope that we have to walk. And the thing about it is the target moves, the goalposts move, in a very good way.
That's why when I think about my training and what we learned, it's not about the drugs. It's not about the surgeries. It's about the way you think. It's about thinking patterns. How do you deal with patients? How do you interpret new data? And that's what I think I've taken over the past 10 years, is if you think only about what you're doing today and that data and that drug, you're going to get left behind very quickly.
The last thing I wanted to be able to tell you is I learned a lot from you in fellowship. We sat next to one another in the room, in our Fellows room, our little cubbyhole. But I also got the chance from time to time to listen to you talk to patients. You just have a way about you. You have a great way of sort of reading someone and then sort of shaping the news to them.
Thank you for that. That's much appreciated. I've learned a bunch from you as well. What you experience as a patient and a physician and an advocate, it's very easy to not see that side of the table. And so to hear your experience and having heard you tell that story multiple times, it never gets old. There's always a new wrinkle. There's always something I can take away from that as well.
And really, I think this is what it's all about is we can learn about the next phase one drug, the next phase three trial, but it's working with, alongside our patients and each other, where we learn how to really care. I thank you for your help there as well.
Yeah. You got it, buddy.
Are you looking for a patient community? Follow Conquer Cancer on Facebook, Twitter, and Instagram, and learn how to connect with support groups through our patient information website, Cancer.net. Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast, and subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories, "Conquering Cancer."
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Will I lose my hair? It's a question most people ask when they begin treatment for cancer. When Sue Paxman, a young mother of four, was in treatment decades ago, she was especially bothered when her hair fell out. Claire Paxman tells her brother
Rich about the moment she stood in the bathroom with their late mother, holding the scissors to help her cut her long, curly hair.
Their mother's experience inspired the family's work in scalp cooling technology, a therapy that helps minimize hair loss for patients. They explain how scalp cooling works and recall their beloved mom in this episode of Your Stories.
She was a fun-loving, beautiful, stunning lady. She just carried everything so well, full of life.
Yeah. Always smiling, that's what I remember. Nothing ever got her down, which was pretty amazing to say what the lady went through. Always positive and sort of go-getter attitude. Nothing got in her way.
That's what inspires me every day because with what she did go through, she never, ever showed that. She had different names for all the appliances and different things in the house. A washing machine was a [? waselcrat. ?] The bath was a [? basilcrat. ?] So she'd go and say, go and run to the [? basilcrat, ?] or go and take the clothes out the [? waselcrat. ?]
A crazy lady, really. I think that might be a good description of her. What was the most standout piece of her appearance wise?
Definitely her beautiful, curly hair, which she loved and was a big, big part of her.
And it meant so much for her to try and keep it.
It did. It was terrifying for her, wasn't it, to lose her hair when she was diagnosed with breast cancer.
Do you remember it being diagnosed?
It's one of the things that stands out in my mind a lot.
How old were you?
14.
I was 10.
Yeah, you were 10. It was frightening, wasn't it?
It was frightening because we were very open in terms of potentially knowing she might only have a couple of years to live.
Make no plans-- that's what she was told.
Can you imagine being told that?
Not at 36. Well, any time.
At 36 with an 18-year-old, 14-year-old, and two 10-year-old kids.
It doesn't even bear thinking about. She was diagnosed twice, wasn't she?
Yeah, a recurrence five years later. We thought we were in the clear.
Yeah.
I used to go and sit with her for chemo.
The second time around.
The second time because it was only up the road from college.
Yeah.
Not that I think she enjoyed me being there because it was probably a private moment, and she didn't want to know she was ill.
Yeah. One of the worst things I've ever had to do, but gives me the passion and drive for what we do now when that was stood in the bathroom with orange-handed scissors from the kitchen, cutting that beautiful, beautiful, curly hair off. 14 years old. Yeah, you shouldn't be stood in the bathroom, cutting your mom's hair off because she's having chemotherapy for cancer. I should have been shopping with her or teenage arguing with her.
Or going to the hairdressers with her, definitely not cutting it off.
Go to the hairdressers, yeah. Not cutting it off. But it was the first time she cried, wasn't it, Rich, when she started to lose her hair.
Well, she could hide it before that. Not hide it, but keep that positive attitude. And people didn't have to know she was sick. So that visible sign, isn't it? As soon as you cut it off, it was that clear sign she was going through chemotherapy treatment and, ultimately, that she was dying. Because she didn't like wigs, did she? She'd wear a baseball cap most of the time.
She did. She really suited a baseball cap. As you'd get older, it becomes more real, doesn't it?
It certainly does. Actually talking about it now is making it feel very real to me. But what we do every day makes it a little bit easier I think, knowing that we're helping people.
Absolutely.
We've been now scalp cooling for the last 20 years, which is quite a historic moment, really, so.
20 years, Rich.
A long time has gone by.
Should we talk about scalp cooling, what it is.
Scalp cooling is a treatment that's been around probably since the 1980s. Older forms of scalp cooling included sort of gel caps and ice packs.
Bags of peas. Bags of peas, even.
Bags of peas.
But our device, very simple refrigeration device. It pumps a liquid coolant around a soft silicone cap, which can be single patient use. And what happens is we cool the scalp of the patient for about 30 minutes before the chemotherapy infusion, during the chemotherapy infusion, and, on average, 90 minutes after, depending on the type of chemotherapy that we're using.
So we restrict the amount of blood flow in chemotherapy that gets to the hair follicle, therefore protecting those high follicles from that toxic chemotherapy. What we also see is the drop in metabolic rate. So that metabolic rate means reduced cell division, so ultimately, less targeted effect of the chemotherapy.
And we do know that our hair cells are very similar to cancer cells in terms of rapidly dividing. So that slowdown really aids the protection. So we're seeing less and less hair loss. And it works in about 60% of patients. How many people do you think we've helped, though?
It's definitely in the hundreds of thousands.
Our overall goal is to make sure every single patient around the world, no matter where they are, has access to scalp cooling, whether they've got the income or not. And that's sort of key to everything that we do. And we'll continue to drive that forward.
All because of one incredible, special lady.
She was a special lady, very much so.
Who we miss dearly, don't we, darling?
We do.
Don't you feel proud?
Massively proud.
The fact that we're this family from a town in Yorkshire, it's wonderful. And that experience of cutting my mum's hair off at 14, if I can help any 14-year-old not to have to go through that, I'm sure it's the same for you.
It's far more than just a medical device business. It's because of mum, and it's, you know, that drive and passion to know that it might not be saving lives, but it's making a lot of people's lives a hell of a lot easier.
Yeah, helping them to live with cancer. And that's huge.
Hair loss, although it might not be a number one priority for a physician or a nurse, actually for a patient, it is one of those highest priorities. And we see that all the time. Even some patients will reject chemotherapy because hair loss. That shows how important it is for patients.
Yeah.
Everyone has their own motivations. That recent lady who didn't want to lose her hair because her daughter used to fall asleep twiddling it in her fingers.
We know about people who've got parents with Alzheimer's, dementia, and they don't want them to not recognize them.
There's tens and tens of thousands of individual reasons why people want to keep their hair. And the last one is vanity, so nothing to do with vanity.
People being able to go about their normal lives, have privacy.
Scalp cooling is now becoming an accepted treatment. So it's 3,500 scalp coolers installed around, what, 52 countries, treating new people every single day, which is phenomenal.
And that is Mum that's doing that. Mum's legacy.
Definitely.
The Paxmans also honor their mother's legacy by supporting cancer research. You can donate in honor of someone you have lost to ensure continued improvements for patients everywhere. Learn more at conquer.org.
Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast. And subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories, Conquering Cancer.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
College. Senior Year. A cancer diagnosis.
Before graduation, a crash course: Cancer 101.
The student and patient, Addison, quizzes her doctor, Jason Luke, on the life-saving thesis he drafted on using immunotherapy as part of her cancer treatment.
College, senior year, a cancer diagnosis. Before graduation, a crash course, Cancer 101. Student and patient, Addison, quizzes her doctor, Jason Luke, on the lifesaving thesis he drafted on using immunotherapy as part of her cancer treatment.
What did it feel like to be diagnosed with melanoma when you were 21? It's kind of funny, I didn't really know what melanoma was. And I told my mom. And her reaction was probably more significant than me hearing it myself. And she found within the day the best melanoma specialists in the area on his day off. And I was seeing him by that afternoon.
And so you went forward and had standard treatment with surgery and they took out a lymph node. How did that all go, and what did you think about that as you're going through?
Melanoma doesn't feel like anything, it's your skin. You feel the surgery, you feel side effects from treatments. Immunotherapy is a whirlwind because there is no standard set of side effects.
And so you have to prepare for everything, which almost makes you just prepare for nothing, because you don't know what's going to happen. That was my senior year of college. I was really focused on my education and finishing school on time. I don't remember feeling like it was any sort of life threatening or life changing event at that time.
It wasn't until way later that I felt that way. My boyfriend, Nathan, and I, we were on our second day making dinner at his house. He's outside getting the grill ready. And my tongue starts fluttering. I'm chopping up something in the kitchen. And I'm like, how embarrassing if he comes in and I can't talk to him?
So I head to his bathroom to just wait it out. And I had a seizure in his bathroom. So he came in and found me seizing. He called 9-1-1, and the ambulance took me to the nearest hospital. They found a tumor the size of a walnut in an area of my brain that controlled my speech.
I immediately talked to a neurosurgeon about getting it out as soon as possible. That's when I was like, OK this is for real, this is scary.
So how did you process that?
My roommate at the time came with me for the results that showed the brain tumor. So it's me and my 24-year-old girlfriend sitting in there. And we walked out, and we went and got ice cream, because ice cream helps everything.
Do you remember what your interactions were like with your parents? How did they talk to you, what did they say?
My parents were surprisingly calm on the phone. And we set a date. There was a little hope left in me that it wasn't cancerous. And then after brain surgery, I remember waking up in the bed and asking if it was melanoma. And my parents nodded their heads. And that was a hard moment because I knew I was in for a long haul. That's when you came in.
I've always been somebody who just moved 100 miles an hour all the time. I've stopped for a second to think like, oh my god, what would it be like to have your child have to go through something like this? It's very hard to think about.
How did you decide who your best doctors were going to be?
I think finding the right doctor is crucial. You came in to one of our appointments. And you're younger than a lot of the doctors that I had seen. And you talk very quickly. You're clearly incredibly smart and up on your research. And we all admired your hair, because you have some flow.
Well, I glad to know that these are elements of decision making.
You told my parents and me that you had been thinking about the treatment plan over the weekend. And you were 100% certain to go with this plan. And it was that trust we had in you that is so important. And you made that decision that ultimately is credited for saving my life.
You're in the field of researching melanoma, which has a huge strides right now and huge advancements. And it's probably one of the most exciting cancers, because you are curing cases. Do you think immunotherapy is going to be the answer ultimately?
Well, I think as we're learning more about immune system treatments for cancer, it's become apparent that what we had missed previously is a reason that other treatments worked because of the immune system. And so to that extent, I would say, yes, absolutely, immunotherapy is going to become an important part of most cancer treatments.
But I also have to frankly say that our ability to truly understand what's going on is honestly quite neophyte. And so there's a lot more to do there.
When I received my remission diagnosis, you were on paternity leave. I've always wondered, do you feel like you missed out on telling me about remission?
The answer is definitely yes. It really is meaningful to be able to be there in that moment and deliver news like that. I think about my role as an oncologist, it's really to help support people as they go through their journey and provide them with the best information and care that I can. You only have to see a case like yours once. And you'll keep doing it every day just in hopes that you could see it again.
Addison graduated, she's now a CPA. Dr. Luke, Conquer Cancer Grant recipient, continues to explore immunotherapy research. To ensure researchers like Dr. Luke keep uncovering new and better cancer treatments, donate to Conquer Cancer today. Visit conquer.org/donate.
Lawrence Einhorn wanted to practice general medicine alongside the father he revered. Life interfered with that dream, but along the way, he discovered the cure for testicular cancer. In 1974, patients facing a disease with a then five-percent cure rate followed the lead of an ambitious but humble young scientist who had unwittingly concocted a miracle mix of chemotherapy. Dr. Einhorn, a Conquer Cancer board member and generous donor, speaks with friend and colleague Patrick Loehrer about his “walk on the moon” that outsmarted what was once the deadliest form of male cancer.
Lawrence Einhorn, a physician and researcher, speaks with friend and colleague Patrick Loehrer about how growing up in Dayton, Ohio, he was inspired to become a physician because of his father's work as a doctor. At a relatively young age, Dr. Einhorn developed a breakthrough treatment for testicular cancer, combining a drug known as platinum with drugs already in use. This resulted in a cure for the once deadly disease.
Dr. Einhorn is a generous supporter of the Conquer Cancer Foundation, as well as a committed member of the foundation's board of directors. Dr. Einhorn begins this segment speaking about his relationship with his dad.
My father was a general practitioner. Our home and his office were in the same building. I grew up admiring him, wanting to be like him, and wanting to be a physician. My goal was to go to medical school and to eventually go back into Dayton, Ohio, and it was going to be Einhorn & Einhorn. And the two of us would be working together. Because of illnesses that he had subsequently during my internship and residency, he had to retire, so that goal never eventuated.
What made you think about going into oncology?
I was romanced by the field of hematology oncology. I felt that taking care of these patients was a real calling. I thought advances were about to be made in the field in the next several years. And this is what I wanted to be by the end of my internship and the start of my residency.
You went to undergraduate at Indiana University, where you did your residency.
Yes, and when I came to Indiana University, I was not intuitive enough or smart enough to think I was going to come up with a successful treatment for testis cancer.
You're very well known because of putting together this wonderful miracle regimen where other people hadn't done it at that time. Here you are as an oncologist. You grew up in Dayton, Ohio. Here's the disease that's the most deadly for young men, and then suddenly you put together this idea for a trial. And what was going on your mind when you first saw these results?
In 1974, when we started our first platinum study, we had no idea it was going to be effective. Even in my youthful exuberance, I never would have dreamed that we would have such a high cure rate. And the fact that we could take a solid tumor and go from a 5% cure rate to, at that time, curing half of the patients-- in your lifetime, you are lucky if you make a difference in people's lives. And this was my walk on the moon, so to speak.
You do this once in your lifetime, to do something and to do it at a relatively young age in your career, that really changed the face of testis cancer, going from a routinely incurable disease, except for a small minority of patients, to a disease that is now highly curable. So it certainly changed my career. But more importantly, it changed the lives and allowed these young patients to have their lives back again.
I think about over the years, some of the patients you've seen. You might explain a little bit about John Cleland and patients that have impacted your life beyond just the disease.
John Cleland was the first patient to be cured with platinum. He had failed to be cured with three different chemotherapy regimens when we met him for the first time in August of 1974. We had no idea that giving him platinum combination chemotherapy would make him live longer, let alone cure his disease. But we did know that he would get terribly sick from it.
It's relatively easier after a couple years, where we knew we were curing patients, that we could tell someone that they would get sick from platinum before we had effective antinausea and vomiting drugs, but they would be cured of their disease. John was very altruistic. He had just graduated from college and was not yet sick from his metastatic testis cancer.
And to be in the hospital for five days in a row having severe nausea and vomiting, do the same thing three weeks later, three weeks later, and three weeks later takes a great deal of courage and determination. That's a remarkable individual who was able to do that. And to be able to see patients start off as an 18- or 21- or 25-year-old, and we're seeing them 5, 10, 15 years later, that's why I have the best job in oncology.
If your dad was sitting here right now, what would you like to say to him? And what would you think he would say back to you?
Well, I would hope that he would be as proud of me as I was of him.
The Conquer Cancer Foundation's mission is to conquer cancer worldwide by funding breakthrough research and sharing cutting-edge knowledge. To learn more about the participants in this session and others like it, please visit conquer.org/storycorps.
When Dr. Nizar Tannir ran out of treatment options for patients with Renal Medullary Carcinoma (RMC), a rare kidney cancer, he left his private practice to research a cure. To take on this uncommon disease, he would need the brightest young researchers and a community of supporters whose commitment to new discoveries is as relentless as his. He found an ally in Conquer Cancer researcher Dr. Pavlos Msaouel. In this episode of Your Stories, the friends and colleagues share the stories of patients who inspire their work and the breakthroughs they've discovered by leaving no stone unturned.
I would like to ask you, Nizar, you went into private practice for many years. What made you come back into academia?
I was in practice many years in rural Kentucky and had a very thriving practice and were seeing patients, young and old, blood disorders, as well as cancers of different types. In ‘92, I diagnosed my father with prostate cancer. I treated him in my practice and he did well for eight years from ‘92 till 2000. And then unfortunately the cancer came back, and he deteriorated. At that moment, I decided that I needed to get back to academia. I needed to be involved in discovery.
Then you started focusing on Renal Medullary Carcinoma, otherwise known as RMC, which is a rare but highly aggressive kidney cancer. What made you focus on this disease?
I started getting referrals of young people with kidney cancer with these rare and aggressive types of kidney cancer. I visited this 39-year-old patient with aggressive Renal Medullary Carcinoma, and unfortunately, he was on his last few days of his life. I was trying to tell him that unfortunately, despite all our efforts, I didn't have any more treatments to offer him. He surprised me with his answer. I remember those words ringing in my ears. He said, ‘What do you mean you have no more to offer me? … I have a six-year-old daughter.’ I left defeated. Felt that RMC had won again, and snatched the life of this young man. I realized that if anybody is going to do something, it's us. We will have to do it. And that's really when I decided that we have to honor the legacy.
So tell us a little bit how activism has accelerated research into Renal Medullary Carcinoma.
There was another patient of mine that I had the privilege of taking care of in 2012. We treated him with chemotherapy. Fortunately, he had a good response and he's alive today, seven years later, and he's been the start of hope for patients with RMC. People have contributed to the research project that we started together and we owe it to that dedication – unwavering dedication – to make a difference in the lives of future patients with RMC.
Then I joined your clinic and I became infected with your obvious enthusiasm and dedication for helping patients with rare and aggressive kidney cancers. What made you push me to the direction of RMC?
I remember my mentor, who said: ‘If you want to succeed, make a difference, and advance the field... bring in young, smart people to work with you.’ And it was my good fortune that you came to my clinic as a first-year fellow. You said ‘I would like to join your clinic. I'm interested in kidney cancer. Prostate cancer.’ I remember how impressed I was? You had fantastic training. You had energy. I could see it in your eyes. Your commitment. And I said, wow. This young man is going to help us correct the mystery of RMC.
What are the challenges that you are experiencing and obstacles in your research on RMC?
One of the challenges, of course, is patient awareness. And this is where having patient advocates and active social media efforts and awareness about our clinical trials and our research is very important. We opened our clinical trial in August 2018. And in just nine months, we enrolled 14 patients out of 30 projected. This is fast for such a rare cancer. And this is in large part thanks to the community efforts to raise awareness.
Do you believe that we will make really good progress in the next few years?
I believe so. Progress will be step by step. We do research in the laboratory trying to find more therapies, trying to design the next steps, the next clinical trials for Renal Medullary Carcinoma and other rare kidney cancers. Rare cancers can essentially serve as the Rosetta Stone that can inform more common cancers. We gain fundamental insights by studying rare cancers. So, one of the things that I see next is that we will be using those insights that we're gaining step by step, not only to help patients with this rare and aggressive cancers that desperately need it, but also many other people.
What is still missing for us to go to the next step?
One thing that will be crucial in this effort to find therapies and understand these rare kidney cancers will be national and international scientific collaborations. This is absolutely key. This is one of the many things that you taught me. It takes a village. This is why we are forming an organization that will be bringing together all stakeholders that are so important. The patients, the caregivers, physicians, researchers, academic thought leaders to accelerate discoveries for both RMC and other cancers that are similar to this disease. And this is what makes me optimistic about the future.
What would you say now to all the patients you and I are seeing?
I would say that if there is one thing that I can promise with 100 percent certainty is that we will leave no stone unturned. We will not stop working to find treatments and ultimately find a cure for this cancer.
That is our commitment to the patients and their loved ones, that we will continue our march onward to find a cure.
You can be part of Dr. Tannir and Dr. Msaouel’s village by supporting research for rare cancers. Learn about breakthroughs for all types of cancer made possible by Conquer Cancer donors at CONQUER.ORG. Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast, and subscribe today on iTunes or Google Play to hear every new episode.
Thanks for listening to Your Stories: Conquering Cancer. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.
To help manage the stress of treating people with life-threatening diseases, doctors are trained to limit the emotions they invest in patients.
As young oncologists, Dr. Rachna Shroff and Dr. Nina Shah followed professional protocol by the book. They kept patients at an arm’s length, in fear of blurring what they felt was an important line between doctor and friend. That all changed when each of their roles were reversed; the doctors became daughters to a parent with cancer.
In this episode of Your Stories, the friends and colleagues discuss how their experiences on the other side of the bench inspired changes in the relationships they allow themselves to develop with patients.
To help people manage the stress of treating people with life-threatening diseases, doctors are trained to limit the emotions they invest in patients. As young oncologists, Dr. Rachna Shroff and Dr. Nina Shah followed professional protocol by the book. They kept patients at an arm's length in fear of blurring what they felt was an important line between doctor and friend. That all changed when each of their roles were reversed.
The doctors became daughters to a patient with cancer. In this episode of Your Stories, the friends and colleagues discuss how their experiences on the other side of the bench inspired changes in the relationships they allow themselves to develop with patients.
What were you like as a fresh, young oncologist?
I definitely remember being energized and ready to take on the oncology world taking care of pancreatic cancer patients and seeing the human side of oncology and seeing the incredible need to help these patients and try to feel like I was making a lasting impact in the field. What about you?
One of the things I think that drew me the most to oncology was that I felt like I could have an impact on someone. When you start out as a young attending-- I call it being youngry-- you're young and hungry-- and you do so many things, but there are only 24 hours in a day.
So sometimes when you take care of patients, you're thinking, OK, I have to take care of this patient and then the next patient. And then, I started to really think about getting to the end of everything I was doing-- the next patient visit, the next paper, the end of writing that. I was starting to become a little bit more distant from the patients. Did you ever feel that way?
Absolutely. As young attendings, we felt that we needed to keep patients that a little bit of an arm's length and either to just maintain that sanctity of that work-life balance that everybody's trying to find as well as trying to prevent burnout. People talk about how, especially in oncology, the more you let somebody in, the harder and more profound you feel losses, the more prone you are to getting burnt out.
I remember thinking, I've got to pace myself here. This is a marathon, this journey of being an oncologist. I wanted to make sure that I was able to have the resilience to take care of all the patients over the course of my career.
You and I used to say this to each other. We've got to protect our spaces. If we get too involved in one thing, we won't have enough energy to get involved with the next patient or be a parent at home or take care of our spouses or our families. And I think we did start to put up a little barrier. We were just trying to be efficient. We were just trying to get everything done. It was hard. When do you think this changed for you?
When it started on the other side. My mother became the stereotypical, statistic, Asian, non-smoking female who got lung cancer. At that moment, I flipped from being the oncologist to being a daughter and a caregiver. I remember feeling so scared and vulnerable. It was a glimpse, at that moment, when I heard her diagnosis, into what patients hear when that diagnosis comes through.
I remember the agony of waiting in a waiting room to see the physician. I remember sitting in the radiology suite with my laptop, refreshing the cat scan images as she was in the scanner, so that I could look at the images and make sure that, after that surgery, that cancer was gone. I remember calling a radiologist on his cell phone to make sure that I got the read of that cat scan. What about you?
I think that it all started to change for me when my dad was diagnosed with cancer. I went through these three stages. The first was the, OK, I'm not going to deal with the emotions right now. I'm going to be functional, get him an appointment. And then the second part was the sadness. I saw my mom start to crumble knowing that he had a very bad diagnosis. And all of us started to be confronted with that reality. It's so different, right, when you're the patient's family member versus the physician.
The third part of it is, I really started to change as a physician. I appreciated the care. But I started to appreciate what it means to have to go through this, all the steps-- waiting in the waiting room, waiting for a doctor's decision, waiting for a result, waiting to see if the medicine works. Then the appreciation of caregiving-- this was something so new to me. I can't believe I didn't realize it until I saw my mom taking care of my dad for a very extended, intense period of time.
They were both around 70. And it's hard to do that. We take care of our kids, but we're much younger. I saw my mom taking him to appointments, rolling him into the car, and waiting to see the doctor. And sometimes I couldn't be with her, and she was just by herself. And she'd have to pack a lunch because, who knew how long the chemo and the blood draw was going to take?
I began to appreciate that I see my patients for 15 minutes in that office, and we talk about what's going to happen. And I walk out the door, and they walk out the door. And after that, the real work begins for the caregiver in an intense way that I didn't appreciate before. We see them every couple of weeks, right?
But we don't see that endless, infinite time in between. That was so impactful to me. I really began to not only speak to the patient, but the caregiver, and it really started to see it from both of their perspectives. And there's so many people who aren't even lucky enough to have a caregiver. And that, I even felt, even more, as an emptiness.
Having gone through this with your mom, how did you start to change, as a doctor?
Well, I think, like you said, I became more keenly aware of what that journey really is like for, not just the patient, but for that patient's entire circle. There were small things that-- even just the ways in which I would talk to patients that I changed. My mother got chemotherapy that I give all the time to my patients. And there's a hearing loss risk associated with it.
And I used to just kind of downplay it, and I'd say, it's incredibly rare; don't worry about it. And with one dose of that chemotherapy, my mom lost her hearing and got hearing aids. And immediately, from that day forward, there was a different way that I presented that chemotherapy to patients and wanted them to understand, it's a small risk, but it's a real risk. Losing your hearing is a big deal.
It's a quality-of-life issue. And when you're dealing with survivorship, the long-term impacts of these toxicities, we literally just fly through on a patient education handout. We have to think of the downstream effects. So I feel like I changed the way I present to those toxicities to patients. I just became more cognizant of the amount of agony that goes into these patients as they're waiting.
I used to walk into the patient's room and try to do my full history and physical before I would give them cat scan results. And I would see them looking at me going please, please, just tell me. Is this working, or is this not? And now I have a recognition of what those additional 5 to 10 minutes is to the patients.
I try my best to make sure that I give them the results-- the good, the bad, and the ugly-- in as timely of a fashion as I can, even if that means making sure that I'm calling them or following up with them. And I do. I'm willing to let them in a little bit. They have access to me, not just my clinical team. Because sometimes, when it was my mother, I needed to hear it from the doctor. There was something about the comfort of hearing it from that physician's mouth directly.
Yeah, after this experience with my dad, I've really begun to open up in a couple of ways. I feel more accessible. I give patients my cell phone number. I used to worry about that because, I would think, they are going to call me, and I'm going to be at my kid's birthday or something. They're so respectful. And I realized that it's a comfort. They know that I'm there for them. And I know that, if something happens, they're going to let me know, and I won't find out two weeks later.
I've also begun to understand that people wait for results, and it's agonizing. So I send a message to the patients, and they have it on their phone. And I can say, hey, I saw your bone marrow. It looks good. I'm happy, smiley face. And I sign it with my first name. I used to get so crazy about people calling me by my first name. I was insecure as a young woman physician.
And I thought, it just meant they didn't respect me. Now I just-- it means that they like me. It means they feel familiar with me. And I don't mind that anymore. I kind of take pride in it a little bit. I feel more connected to them. And it really does make it an experience for all of us. And it's really more rich.
What do you think has changed about how you approach clinical research?
Having had a loved one have cancer and have them receive the benefit of progress that has been made through clinical research, it is always at the forefront of my mind in the diseases that I treat. We need to be doing better. And I know that the only way we can be doing better is clinical research. Clinical trials are so incredibly labor-intensive from a patient perspective.
When there's a study that involves multiple blood draws, and you have to be at a infusion center for 10 hours, and then come back the next day and be there for six hours, that is a lot for a patient. And traveling, and you're paying for parking, and you have young kids, and you're trying to find childcare for your family so you can be there all day.
Yeah, I've appreciated that patients are not just patients. They're humans and that they are intellectual and have curiosity. And more now than ever, they've done their research, and they've looked up things. And they follow people on Twitter and look at your YouTube videos. And this has changed the discussion about clinical trials in my practice because they come to me, and they know what trial they want.
When I was a junior attending, I would have been put off by that because I would have felt that they might know something more than I do. We have now, I think, way better discussions than I was capable of having before because I let them into my mind too, not just my heart. I think these are things that we've been able to grow with as we've become more mature and maybe more open. What do you think you would tell a junior attending who's starting as an oncologist?
I would emphasize that it is not only OK, but it is important to let your patients in and to share the journey with them. Because what I've come to realize is, what seem like very small things for us to do are so incredibly meaningful to our patients. At the end of the day, these patients know that their lives are in your hands.
And it gives them faith and trust on a totally different level. You are initially thinking that letting your patients in makes it harder, it's more emotionally draining, and leads to burnout. I actually think it's the exact opposite. Developing those human interactions and relationships with these people and knowing who matters to them, what they love, what they're living for is actually invigorating.
It is exactly what is going to prevent burnout. You should not hold patients at an arm's distance, because there's so much that we can learn from them just as much as they can learn from us.
Yeah, if I had to tell myself 10 years ago, some advice, it would be, open your heart. Let people in. Let patients in. It's going to make you see all 360 degrees of this job. It's going to make you a better person, not just a better physician. I would say, with every patient encounter, to look at it through the patient eyes.
Imagine what it's like to sit in that chair across from you. Imagine what it's like to leave that clinic area, to check out, and get in a car and drive home. Imagine what it's like to care for someone. And if you'd put yourself in that position, it's going to open your entire career to be something more meaningful than you ever thought possible.
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Personal experiences shaped Dr. Shroff and Dr. Shah's approach to patients. But they remain engrossed in the science of clinical research to make important treatment decisions. Both doctors advocate for cancer research funding, particularly, for women oncologists. You can learn more about the research Conquer Cancer supports at conquer.org.
Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast. And subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories-- Conquering Cancer.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Cancer, a love story? Dr. Enrique Soto “fell in love” with geriatric patients and married it with his other passion: oncology. He speaks to his wife and colleague Yanin Chavarri about how patients (and the research partner he would eventually wed) inspire his work. Dr. Soto is the recipient of three Conquer Cancer grants and is a generous donor.
Enrique Soto, a geriatric oncologist from Mexico, speaks to his wife and colleague, Yanin Chavarri, about what drew him to his field. Dr. Soto shares how the joy of his practice comes from the wisdom he garners from his patients. Dr. Soto's commitment to research solidified upon meeting his soon to be wife, Yanin, during his early years in research.
He is the recipient of three grants funded by the Conquer Cancer Foundation and is a generous donor to the organization. Dr. Soto begins the segment by sharing what motivated him to focus on oncology.
We all get into medicine to help people. Some do it more than others. But I think I just saw working with patients with cancer as a great opportunity to actually do something good for people and for the world in general, as romantic as it may sound.
I know that you are also interested in other patients. Can you tell me about that interest?
My main interest is geriatric oncology, so cancer in people 65 and older. This started because, in my second year of fellowship, I had the fortune of being assigned to a geriatric sector in which all the patients were over 65. And it was such an incredible experience. It really changed the way I saw medicine.
And I fell in love with geriatrics. So it was a great opportunity to meld two things that I really love, oncology and geriatrics. One of the things I like the most about older patients is that they all have stories to tell. They all have experiences that they want to share with you.
So it's not only a great opportunity to help them with their disease, but also a great opportunity to learn about them, to learn from them, and to use those teachings and that knowledge and that wisdom for your own life and for your own experiences, not only in work, but in life in general.
Do you have any specific story with a patient?
I had a patient who brought in an entire cooked hen. This patient lived in a small village. And she cooked the one of her hens, a big chicken, and brought it to us in the clinic.
But I think that the best stories are those of patients who become part of your life. And you become part of their life. They call you when they feel bad, even if it's not related to their cancer. They call you when other family members are feeling bad.
As you well know, I usually work in Mexico. But now I'm living in the United States for a year. And I've had patients send me, like, photos of themselves when they go to clinic and they see other physicians who are not me. Like, taking selfies with the other physicians to show me that they are there, that they're feeling great, telling me that they miss me. Those patients' stories, as simple as they may seem, just sending me a selfie, it makes everything worthwhile.
What inspired you to start doing research?
It's not what, but who-- the patients, finding solutions for the patients. And also, you are one of the people who inspired me to start doing research. Because the first research work I did was working with you. That was my first inspiration to do research.
If I have to thank oncology and research for something is that it was an opportunity to meet you and to marry you. So what else would one want, you know?
What's next for you? Next is going back to Mexico, trying to bring some of the things that I've learned back to my country. And to continue helping patients and creating new solutions and trying to improve the way people with cancer live, a life long goal.
The Conquer Cancer Foundation's mission is to conquer cancer worldwide by funding breakthrough research and sharing cutting edge knowledge. To learn more about the participants in this session and others like it, please visit Conquer.org/StoryCorps.
A clinical trial prolonged Jane Coulbourne’s life, allowing her to work tirelessly for others before she died of cancer. Jane was a fierce patient advocate and a champion of research whose legacy is still impacting the quality of care patients receive.
In this episode of Your Stories, Jane’s husband, Bill, talks to Jane’s friend, Susan Braun, about how Jane used her illness to help others. He recalls the joys and heartbreaks of loving and caring for his wife…in sickness and in health.
It’s January. Are you among the many people resolved to change your diet in the new year?
Dr. Neil Iyengar and Dr. Nadja Pinnavaia commit to promoting healthy lifestyles every day in their work to prevent cancer and keep it from returning in patients who have already conquered it.
In this episode of Your Stories, they prescribe lifestyle changes influenced by their expertise in disease intervention and share details about their partnership to simplify healthy living for breast cancer survivors.
It's January. Are you among the many people resolve to change your diet in the new year? Dr. Neil Iyengar and Dr. Nadja Pinnavaia commit to promoting healthy lifestyles every day in their work to prevent cancer and keep it from returning in patients who have already conquered it. Dr. Iyengar is a leading oncology researcher studying the links between obesity and breast cancer.
Dr. Pinnavaia left a career in finance to launch a meal and coaching service to transition people into a healthy way of life. In this episode of Your Stories, they prescribe lifestyle changes influenced by their expertise in disease intervention and share details about their partnership to simplify healthy living for breast cancer survivors.
Nadja, could you tell me a little bit about your history with cancer-- I know it's been present in your family-- and how that has colored your upbringing and your current philosophy?
Cancer touches so many of us these days and often creates a new path for us. My mother was diagnosed with breast cancer 30 years ago. And she was triple negative. And she died 20 years ago. And then four years ago, my sister was diagnosed with breast cancer. And she was operated. And I, at that point, went to be tested genetically. And I'm BRCA2, and I had a prophylactic double mastectomy.
Then more recently, my mother-in-law, whom I'm very close to because both my parents have passed away, was diagnosed with stage 3b kidney cancer. And that actually opened up a new world for me of research and learning about what is it that we can do on top of the great clinical strides that we're making with chemotherapy in order to help our chances of surviving cancer.
I'm curious to understand your decision making around the genetic testing and what really prompted you. I understand the family history. But what really made you decide now's the time for me to go get tested?
Cancer today is a makeup of genes and our environment. I didn't realize how much environment impacted our cancer journey. But if I have cancer coming my way, I'd rather know about it and be on the lookout for it and encompass some changes in my life.
I've been impressed with the way that you have taken your experience and really forged a way forward to take control of some of our environmental factors like diet, for example.
Well, when my mother-in-law was diagnosed with kidney cancer, it was really a stimulus to try and do something to be helpful, not just stand around and keep my fingers crossed for the chemotherapy. Up until that point, I didn't have an awareness of how much lifestyle and environment impacts our ability to stave off cancer cell growth when we have cancer and also increase our odds of survivorship.
It was a learning experience for me to understand how much nutrition, exercise, mental health, and sleep are factors that can strengthen our immune system, keep inflammation low, which are two of the major foundations behind our body that's always staving off rogue cancer cell growth until it can't. So when I learned that, it became my mission to try and help people transition their lifestyle where we can increase odds of survivorship.
I'm curious how you really got to the execution phase. You have this wonderful plant-based approach. But you also take a deeper dive into how people view their lifestyle and how you might be able to change behaviors.
First was the awareness of how much lifestyle impacts us. I was learning that sugar is not empty calories. So I now understand that what we eat is really important to our immune system, inflammation, and not just for cancer, but for the whole host of other chronic diseases.
Today's modern diet that's filled with sugar and refined grains and doesn't have a lot of natural fiber in it means that we're generating insulin very quickly because it's quickly broken down to our bloodstream. We're storing it as fat. And the brain is actually telling us to eat more. The conventional advice of eat less, move more when the brain's saying eat more, move less doesn't work.
So we give people nutrient-dense food, the stuff that's going to make them feel great, going to satisfy the brain, going to make them feel full and satiated without the brain saying eat more, eat more. Well, we've done that through education and coaching.
People come out where they feel good. They've lost weight. They're now used to eating in a different way. They're changing those habits, grabbing the bag of nuts as opposed to the cookie in the afternoon. So we're trying to get people to go back to basics.
So with that kind of background, I became very interested in the work that you're doing nutritionally. I'm very excited about the opportunity for us to collaborate and start thinking about how we can incorporate the dietary philosophy that you have operationalized so well with the exercise prescriptions after a cancer diagnosis.
I have the ultimate respect for the work that you've done as a scientist, as an oncologist, very focused on clinical studies, yet with the open mind to understand how we can build in lifestyle factors to complement the clinical work.
Well, thank you. As you point out, lifestyle is such an incredibly important part of prevention and also improving responses to therapy and prevention of resistance and recurrence. The problem is we have a lot of work to do scientifically. We don't have specific personalized recommendations yet to advise people what they should be doing specifically with their diet, what they should be specifically doing with their physical activity patterns and other lifestyle factors.
And I think a lot of that stems from the fact that we're just starting to learn more about the biology behind our metabolisms and the promotion of cancer growth. We're starting now in the oncology world to look at the human as a whole rather than zeroed in on the tumor.
And part of that is really looking at lifestyle and environmental factors and the interplay with prevention and standardized care after a cancer diagnosis. We've been able to take these fields of tumor and host biology as well as nutrition, physical activity, and lifestyle and start to offer interventions to hopefully improve cancer prevention and cancer outcomes.
And so we're taking people who've been diagnosed with breast cancer after their surgery and chemotherapy who are struggling with their weight. We will randomize them to two different types of intervention. One is a intervention where you and I are collaborating to provide the food for the participants. We will also provide the supervised exercise prescription that's individualized for each patient.
And the control will still be an intervention, counseling patients via telephone and some personal visits to help advise them in what we think they should be doing in terms of their diet and their physical activity pattern. I think that our collaboration on this is incredibly important because what you provide is a mechanism for people to operationalize recommendations that are given to them and also even a referral source for caregivers and physicians. So ultimately, I hope that we generate real-world data.
Yeah, absolutely. When you think about this trial, what are the markers that you are most interested in observing?
We've talked a bit about how fat levels tell us more than a person's weight. So we'll be looking at changes in body composition. But we're particularly interested in the biology of the breast. We know that obesity is associated with not only a metabolically-unhealthy breast, but an inflamed and proestrogenic microenvironment that is ripe for the growth of tumors. And so we're very interested in determining whether or not the intervention that we're testing can reverse that process in the breast.
We have adequate data to suggest that healthier eating patterns and exercise can bring down circulating levels of insulin and proinflammatory molecules. If we can show that such an intervention does improve the landscape of the organ and thereby reduce the likelihood of developing cancer, I think we'll be standing in a place where we can make significant clinical impact.
I'm very excited. I've got two little kids. And probably if I dig deep, the reason I started is because I want to do everything I possibly can so that I'm around as long as I can be for my children. I don't want them to experience what I experienced as a child. And so if you can start with the food component, you feel better. And everything else comes beautifully into place.
I think that's so important. One of the great things about this type of intervention is the impact that it has on a person's life as a whole.
There's no downside.
That's right.
As Dr. Pinnavaia reminds us, how we fuel our body matters. Choose the bag of nuts over the bag of cookies today. Dr. Iyengar is proof that fueling the progress of cancer research matters too. His studies to better understand metabolic health in cancer were funded by Conquer Cancer donors. And there's still so much to understand about how to treat cancer but, most importantly, how to stave it off from the start. You can learn more about Dr. Iyengar's research at conquer.org.
Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast. And subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories-- Conquering Cancer.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
On a Saturday morning, a wife wakes to telling signs that her husband is not well.
Before Sunday comes, a devastating diagnosis: A young father has a one percent chance of surviving.
On a Saturday morning, a wife wakes to telling signs that her husband is not well. Before Sunday comes, a devastating diagnosis-- a young father has a 1% chance of surviving. The search is on for a life-extending treatment. Erin, who lost her husband Mike, and Erin's sister, Dana, share the deeply emotional experiences and daunting medical logistics of loving someone through a terminal illness. We hear from Erin first.
Mike was brilliant. Had a PhD in genetics. He was 44 years old at the time he was diagnosed with stage four pancreatic cancer and given three to five months to live. He was a great dad and a great husband. He was quiet, but he was tough and stubborn as heck. And he was a big, strong, and somewhat intimidating guy.
Do you remember the day that you found out that Mike had pancreatic cancer?
That was a day that was a paradigm shift for me and I guess really for us as an entire family. We woke up in the morning. It was a Saturday. I woke up, and I looked over at him. And he was yellow. He was jaundiced. I was startled, and I woke him up. And he looked at me. And he said, what are you doing? And I said, you're jaundiced. Your eyes are yellow. Your skin is yellow.
So literally like overnight.
Overnight. So they did a CT scan, and then they asked us to come in. And they sat us down across the desk from a doctor and said, we hate to tell you this, but you have a mass in your pancreas and lesions on your liver and in your lungs.
Wow.
And Mike right away said, what's it look like for me? Are things any better now for pancreatic cancer than they were years ago? And the doctor said no. He said, you have like a 1/2 to 1% chance of recovering from this disease at stage 4. So basically that was it.
So how did Mike's cancer change your life?
Before Mike was diagnosed, I was a very, very happy stay-at-home mom and wife. And I loved my life. And I got suddenly thrown into the caregiver position for him and for my children. I thought that would be when we got old. I had no idea it would be at 36. So it was very difficult. How did you feel when I told you about Mike's diagnosis?
We were in California. And I was with Dave and Mom and Dad. And you said, Mike has pancreatic cancer. So it was a very surreal moment for me because my first thought was that can't be right. Like someone's made a mistake. I didn't know a lot about cancer. At that point in our lives, we really hadn't been exposed. Nobody in our family had cancer until that point in time. That moment changed my life. I knew that I had to help my family. You're my little sister.
Then you asked me to help, to see what was out there in relation to clinical trials because Mike was not inclined to just do standard of care. That gave me a lot of purpose and a lot of focus because that allowed me to do something. So I spent the next five weeks combing through the internet about clinical trials and whatever opportunities that might be out there for Mike.
I'd read two sentences of a protocol and have to look 16 words up because I had no clue what I was reading. I learned a lot through that process. And I did find three or four trials that Mike could qualify for. And fortunately, he was accepted into a trial.
All the pieces kind of fit into place for us. And we felt very fortunate at the time. And then with Mike's response to the trial, he really regained his quality of life.
He did. He felt great on the clinical trial, didn't make him sick. So we had some really great time. He lived 19 months, which may not sound like a lot or enough. But it made the difference between Caitlin, who was 4, remembering him or not. We were able to go on some vacations. He was able to coach her T-ball team and take the boys camping, which was a really big deal to them. So we had that time. And it was really good time for us.
So Erin, as Mike's caregiver, what advice would you give to other people?
The biggest thing throughout the journey that I learned that I didn't know prior was that hope really is everything. And without it we had nothing. So being able to continue to have hope helped us to continue to fight. That knowledge is power. And patients should have that knowledge to be able to determine their own path. And as a caregiver, I learned that I had to be accepting of Mike's decisions for himself for his own path.
What surprised you about that journey? Mike got cards from not just throughout the country but from people he knew throughout the world. Every night, we'd go to the mailbox together. And we'd get his cards. And he would come back. And he would sit in his rocking chair and read those cards and just cry every night. And that was surprising to me because Mike-- he was a tough guy. He didn't cry. But that became his practice. And it was cathartic for him.
One of the things that stands out that surprised me was that his passing was very peaceful. It was very difficult getting to that point. But I can remember laying my head on his chest and listening to his last heartbeat.
And I whispered to him at that time. I said, it's OK. We're going to be fine. And his heart stopped beating. I think about that moment so often. And it sounds strange. But somewhere in my heart, that has become a beautiful moment for me.
A clinical trial gave Erin's family the gift of time. Turning heartache into hope, Erin and Dana made a gift to support the Conquer Cancer Foundation. Conquer Cancer donors have supported nearly 1,500 research projects to better treat patients like Mike. Join Erin and Dana. Make a gift to Conquer Cancer, and give the gift of time visit. Visit conquer.org/donate.
Stuart Spigel wanted to be a forest ranger. His mother…well, she had other plans.
Dr. Stuart Spigel would become Nashville’s first oncologist. Though not the rustic wilderness he’d dreamed of exploring, cancer in the 1970’s was an uncharted field.
In a conversation with son and fellow oncologist, David Spigel, you’ll hear candid insight into the ever-changing landscape of cancer care and how becoming a patient himself forever changed Stuart’s relationship with those he treated.
Stuart Spigel wanted to be a forest ranger. His mother, well, she had other plans. Dr. Stuart Spigel would become Nashville's first oncologist. Though not the rustic wilderness he'd dreamed of exploring, cancer in the 1970s was an uncharted field.
In a conversation with son and fellow oncologist David Spigel, you'll hear candid insight into the ever-changing landscape of cancer care, and how becoming a patient himself forever changed Stuart's relationship with those he treated.
In my senior year of high school, my mother had me tested in New York City, and I did three days of testing.
To see what you would be in life?
Yes. I wanted to be a forest ranger, the only Jewish forest ranger.
But at the end of the three days, there was a counseling session. And the counselor said, ma'am, your son is cut out to be a social worker or a forest ranger. And my mother grabbed my wrist and said, my son is going to be a doctor. And that's why I became a doctor, to be honest with you.
I knew I wanted internal medicine. And with each of the rotations, I was disappointed. Then I rotated in oncology. Wow, oncology. I had two exciting teachers, and they were doing exciting things. It had just been shown that Hodgkin's disease could be treated successfully and perhaps cured with chemotherapy. And that was really exciting for me.
It's interesting, because I'm an oncologist, and to me, right now feels like the most exciting time in the history of medicine, not just oncology, with the things we can do, the discoveries being made, the pace of development. And I look back to even just 20 years ago, and I think, boy, there really wasn't a lot to do there. And so you're talking about 1969, 1970, you felt like then you were doing a lot of great things or things were happening, and it was exciting as well.
In 1969, we began to treat women with widespread breast cancer, and we sought to publish our experience with 25 such patients. And we submitted that article to the Journal of the American Medical Association, the New England Journal of Medicine, the Annals of Internal Medicine.
Did you author that? You were the first author?
Yes, I was the lead author, and it was rejected by everyone. The editorial comment from the Journal of the American Medical Association was, our readership is not interested in cancer. We don't believe cancer is a treatable disease. Now you pick up any medical journal, and at least 50% is devoted to oncology. It's incredible.
So I want to fast-forward to Nashville.
Believe it or not, there was no medical oncology at the time in Nashville, and I became the first trained medical oncologist in Nashville, Tennessee.
And I remember as a child, your day didn't stop. You were the only one going to the hospital. I just don't know how you did it.
I don't either. I wasn't getting home until late. And so finally, in 1979, I started my own practice.
So that same practice today is now 89 physicians, one of the largest in the United States. That was the group you started.
Yes.
That feel weird?
Yes.
Did you enjoy it? Or the joy--
No.
Oh, you didn't.
It was joyless. I mean, I worked from dawn to late at night, and my marriage dissolved. And in large part, it was because of my work.
When did things change for you, where being a doctor became gratifying?
When I hired help, and we began to have the time to enjoy life a little bit.
It is gratifying for me now, walking in the same hall as you walked in, doing the same things. And it's rare for me to encounter a patient who doesn't confuse me with you because "You took care of my grandmother," or "You took care of my mailman's mother." And I have to tell them, no, that's the other Dr. Spigel.
Noah, my son, who's 13 right now, I brought him to the hospital, and I had to run back to see a patient. And I left him at the nurses' station on a stool. Then I came back, and the clerk there had been there when you were working. And she said, David, that was you on that stool with me all those years ago. And it's just kind of interesting because I do remember I used to round with you probably at Noah's age. Those were memorable moments for me.
I did want to shift a little bit because something happened in your life when I was an intern at Indiana. You were 53 at the time, and you had been diagnosed with prostate cancer. I thought maybe I'd ask you about that time in your life and how it's been since.
I really have never paid much attention to my own health. But as I reached that age, my primary care doctor began to do the PSA, the Prostate-Specific Antigen. And it came back 7. The norms are 4 or less.
I had a needle biopsy of the prostate, and that came back as malignant. And within, oh, 10 days, I underwent surgery, and my PSA fell to undetectable levels, and all was well for a period of time. And then in 2003, my PSA became detectable and began to climb. And long story short, on the premise that a recurrence could take place in the prostate bed, I had radiation therapy.
That must have been a difficult time to pause and figure out, OK, I've got to worry about me for the moment.
I'd only had one day off because of sickness in my life, up to that point. So yes, that was a big deal.
How was it to walk into a room with a patient, even if they didn't have prostate cancer, but they had any cancer, did anything change for you?
It did. It made me more empathic. And sometimes it would actually help the patient, because I could say, I have cancer too. And I'm not asking for your sympathy. I just wanted you to know that I've walked where you've walked, and I've had the same anxieties you've had and still have. And that, I think, made me a better doctor.
So you are 75, and yet you just retired.
Yeah, I retired.
And so you're in Maine. You live on an island, off an island, where you, I think, have always wanted to be, in a great beautiful place that's outdoors without a lot of heat.
Yeah, I could be a forest ranger at last.
David follows in his dad's footsteps, blazing trails in oncology to discover new treatments. The Spigel family donates to Conquer Cancer to bring those new treatments to patients sooner. Join them and be part of the most exciting time in medicine by making a gift at conquer.org/donate.
“Just let me die.”
That’s what Linda said after receiving her leukemia diagnosis.
Not all patients believe they can conquer cancer.
Linda and her daughter, Marissa, relive the first day in the hospital and the year of medical house arrest that was part of Linda’s life-saving treatment.
Just let me die. That's what Linda said after receiving her leukemia diagnosis. Not all patients believe they can conquer cancer. Linda and her daughter Marissa relived the first day in the hospital and the year of medical house arrest that was part of Linda's life saving treatment.
Let's start back at the beginning. How did you learn that you had leukemia?
Well, I had just retired from teaching. And I started feeling really very weak. I also wasn't eating anything, couldn't eat. I went to see my doctor the next day. She did bloodwork. Called later and said, you need to get to the hospital right away. So--
Off to the hospital.
--off to the hospital. And they did more tests. And I remember the doctor coming in and saying I had acute myeloid leukemia.
And I just pulled the sheet over my head. And I didn't want to hear anything else. I didn't want to hear any of it.
I don't know if I was in shock. I wasn't in disbelief. Because I all along thought I knew this was going to happen to me.
What got you past that initial moment of not wanting to hear anything? I just kind of went with it.
Well, there's no time to really think.
Right. I think I was thinking whatever happens happens. And I know several times I said I just want to die. I remember looking at you and mouthing, I just want to die. And you just shaking your head, saying no.
No.
No.
No. That was not an option. We knew you. And we know how you deal with medical problems or issues. And for us, it was we're going to fight this and we're going to do everything that we can.
So you can sit there and you can feel that way. But we're going to be the people who are pushing this forward and meeting with the doctors and asking the questions and just sort of making sure we're doing as much as we can. But it was important for you to have that moment, though. Because you know, we're not the ones who are being told that we have cancer, you are. And so I think we wanted to give you that space to sort of go through that acceptance.
Yeah, I guess at some point, obviously, I did accept it. But I got to the point with just tell me what I have to do and I'll do it.
And you fought the whole way. But you did what you needed to do. And really, you were the one who got yourself through the next round of chemo, the next round of radiation. And oh, then, there's this thing that's a bone marrow transplant.
Right. And you were my donor. So--
I won.
You won. Did you have any fears about that whole thing?
I didn't really. I guess there was a little apprehension about just sort of being put under. But I think my reaction was just sort of great, when do we do this, how soon do we do this, how fast do we do this. There was never a question that this was the right thing to do.
I mean, it just felt like I took a nap for a morning. I go under they take a liter of bone marrow. I just generate it. So there's no real impact to me. I was bruised and sore. And then they just process it, bring it to you.
I remember the doctor coming in with your bone marrow. And the chaplain was there and said a prayer over it.
And then it just goes in your body. It knows where to go. And then it just starts doing what it needs to do.
That was an emotional moment thinking that you were saving my life. So anyway, the day came when I could leave. And when I got home, it was still a year you can't go to a restaurant--
Medical house arrest.
Right. You can't go to the movies you can't go to any public places at all.
Can't really see people.
And so I said, oh, but I can garden. No. You can't even do that. So I was, OK, now what am I going to do? I got into my photography. I got into art. I did the sketchbook. I finally hung all those family portraits.
I was going to say, years of my life I've heard about portraits up the stairwell. And now you finally did it.
So it was weekly visits to the hospital. And then every two weeks, and now it's one month. I've done very well so far.
So you had said that you always felt that something would happen. You would get leukemia. You would get cancer. Do you still carry that, where you feel like something's going to happen? Or do you feel like you've been able to kind of get past that because you experienced it and you know what it is and you know you can beat it?
I don't feel as anxious as I did. Because I know that somehow you get through these things-- somehow. I didn't know that I was as strong as I was. So I don't think about the future. I can't go beyond, let's say, a month.
It's this is what I'm going to do today. I'm going to make sure I enjoy this day and take advantage of this day. I can't think about a year or two from now. I can't. People say living in the now. But it's true. It's not a bad way to live--
No.
--if you can do it.
Linda is now in remission. And her family donates to Conquer Cancer to ensure other patients face treatment with the same hope Linda was given. A gift to Conquer Cancer provides patients treatment options and the encouragement needed to embrace their conqueror within. Inspire a conqueror. Make a gift today by visiting Conquer.org/donate.
When given a 50-50 chance of surviving blood cancer as a teen in the 1970s, Sophia believed she was going to survive. And Sophia was right.
Fast forward to an eerie dream that nudges the then-30 something mom to seek a second opinion after a doctor dismisses her worries when she finds a lump in her breast. She was right again.
Sophia candidly shares her experiences with her daughter, Kalli, who listens to the details of her mother’s diagnoses for the first time.
Do you believe in a woman's intuition? When given a 50/50 chance of surviving blood cancer as a teen in the 1970s, Sophia believed she was going to survive, even when many around her began preparing for the worst. And Sophia was right.
Fast-forward to an eerie dream that nudges the then-30-something mom to seek a second opinion after a doctor dismisses her worries when she finds a lump in her breast. She was right again. Sophia candidly shares her experiences with her daughter Kalli, who listens to the details of her mother's diagnosis for the first time. Kalli speaks first.
We're here to talk about your experience with cancer. I'm really interested in what life was like before your diagnosis, and what made you go to the doctor and see what was going on.
That's a really interesting question. I was in the 10th grade, and I was playing on the softball team. I played center field, and I noticed I was starting to get a little bit more winded than usual. And I started running this low-grade fever and getting chills and night sweats.
Your grandfather, my dad, brought me into the doctor's office, and they did a chest X-ray. And it was the first time I ever saw my dad cry, because I had a huge grapefruit-sized tumor pressing against my heart. They admitted me into the hospital right away. My white blood count apparently was through the roof. And then they confirmed that it was Hodgkin's lymphoma. And I remember my parents celebrating that, because with Hodgkin's lymphoma, I had a 50/50 chance of surviving.
I don't think I've ever heard that part of the story before.
We would go to New York twice a month. I'd get my chemo, and then I'd be sick all weekend. And I basically puked my brains out all weekend. But youth is wonderful. On Monday, I'd be fine and went back to school.
How long were you in chemo? And how long until your doctor finally told you you were cancer free?
I was in a clinical trial at Sloan Kettering. It went on for two years. They didn't paint a rosy picture at first. But they were so impressed by that tumor's reaction, that they upped my odds of survival. It went from 50% to 80% or 90%. So that gave me a lot of confidence.
My last treatment was a week before I graduated high school.
Aw.
So as you can imagine, it was a huge celebration. Oh, my goodness. We went down to the river, and we just partied--
--and then not just once.
Not just once-- I love it.
So I came out of this with the feeling that I'm going to be one of those people who's going to survive this. Did I think about dying? Heck, yeah. Frankly, I think I thought more about losing my hair, but I was a teenager. [CHUCKLES] I don't know.
Were you ever concerned that you would get cancer again?
The short answer is no. Sloan Kettering released me from their care after five years. At the time, because I was one of the first cohort to be cured, they didn't really know about long-term effects. It was only later that they'd started discovering the radiation we got can lead to a second cancer.
So you met my dad. You dated. How did he react to finding out that you were a cancer survivor?
He had one of the best reactions, and that's probably when I knew I was going to marry him.
He was like, oh, OK, so you had cancer. Well, let me tell you about me. It never was an issue. And I think, if anything, for him it was, wow, she's a really strong person. So for him, I think it ended up being a point of attraction.
That's wonderful. So you guys got married, you had us, and my sister and I, Kathleen, were about a year and a half when you got your breast cancer diagnosis. What led to you going to the doctor?
I remember feeling a lump in my breast. Being proactive, I said, let me call my gynecologist. Her response was, oh, you're not old enough. Just let me know if it's still there in six months. And I remember going to sleep that night, and I had a dream, Kal.
And in the dream, I was in this room, and I was looking down at you and your sister and your father. I could see you all, I could hear you all, but you couldn't see me. And it was the worst feeling in my life. And I realized that I had died.
And I woke up from that dream, and I said to your dad, I'm going to the doctor. So I did. And the radiologist puts the film up, and he says, this does not look good. You've got to get this taken care of. And long story short, they took the tumor out. And I'll never forget the oncologist. I was sitting down with him, and I said, I don't know if I can go through two years of chemo. Do I really need the chemo? And he looked at me. He says, two years? Sophia, we only have to do about six months. And then I burst out laughing. I was so happy.
How different was it compared to your first time going through cancer treatment?
So now I'm a 30-something. I have these twin daughters, a year and a half old, and my husband, and a full-time job. I'm like, holy cow, can I do this again? Of course I have to. I have to be there for my family.
The whole landscape had changed in terms of support. People were bringing us meals. And I remember walking into Duke and seeing this sign, "Duke Cancer Patient Support Program," and saying, what is that? And then figuring out those were social workers and counselors that were there to help cancer patients. I mean, we didn't have any of that back in the '70s.
How did your second cancer really morph your life?
I started volunteering through the Cancer Patient Support Program. And the director said to me, have you ever thought of going into social work? So I applied and was accepted at UNC Chapel Hill. I assumed I was going to leave it at that, and then become a social work clinician.
And something happened. I fell in love with research and decided, you know what, I'm going to do this for a living, because I can help people. And I had that one degree of separation, so I wasn't in the cancer world every day. And for me, that was a good fit. I really enjoy my research.
How do you think your life would have been if you hadn't been diagnosed with cancer?
What I describe sounds like I had a lot of challenges, and it was really tough to go through. But I wouldn't trade where I am right now with anybody else for anything. I'm completely happy. And whether it was a cancer diagnosis or an accident or whatever put me here, I'm just really grateful. I recognize the gift that cancer brought me and made me who I am.
As a daughter of a two-time cancer survivor, it's certainly been so inspiring. That's the major reason why I myself am in the research field now. I'm in awe of you and just so proud. Thank you for sharing this with me.
Thank you for that. You're beautiful.
You're beautiful too.
Conquer Cancer donors have supported nearly 1,500 research projects like the clinical trial that saved Sophia's life. Now in her 50s, Sophia dedicates her career to helping patients. You can help patients by donating to Conquer Cancer. Make a gift today at conquer.org/donate.
Dr. Arti Hurria, ASCO board member, talks to her patient and friend, Margaret Sedenquist, about her career and what inspired her along the way.
Arti, how did you happen to decide to become a doctor?
Both of my parents had immigrated to the US, and both were doctors. So growing up, I was surrounded by medicine pretty much day and night. They were either studying or on call or taking calls. And so I really was immersed in the field from the very beginning and felt like the natural path that proved to be the right one.
How did you happen to go into geriatrics as such a young person?
I was incredibly fortunate. I had a mentor who was a geriatrician. And she had this love of caring for older adults. And I acquired that through watching her interact with her patients. That beautiful relationship that you develop with someone and learn about all that they've been through was very appealing to me and the idea that you were going to travel with them through the end of their life. I knew I wanted to be an oncologist, though.
How did that come about?
My mom was a radiation oncologist and loved her field. And I was exposed to oncology also during training. And it was the same type of love, this chronic care for someone during a really challenging part of their life and walking on that journey with them, just the beauty of having the honor to do that. So I wanted to be an oncologist. I knew I wanted to care for older adults. Hence, the two fellowships, geriatrics and oncology.
At that time, it was almost viewed as being perhaps unfocused in some way because I was choosing two different fields. Why couldn't I just settle on one? But I had a great mentor who said, you can do it. Why not? That's something that's needed. And she encouraged me to do the geriatrics and then go into oncology. And that proved to be a really wise piece of advice.
So from there, it really was a launch of a career and research in this field. I always loved taking care of patients. So my research was based upon the questions that patients were asking me, things like, tell me based upon who I am as a whole person age being just one small part, how should we tailor my treatment? And what's my risk of side effects? It was those patient-driven questions that drove a whole research career.
And I can speak from experience that you've been successful at it because I've have been your patient. And you did do exactly that. I know that your research is effective.
The greatest part about being a doctor is getting to know patients like you. It really doesn't get better than that, the chance to get to know someone, to walk with them during a period of their life over years, and to share one another's lives, and watch you age successfully and with such grace--
I beg your pardon.
--despite cancer.
Well, you've also mentored other doctors doing research.
An important part of being a doctor is to pass on both the clinical skills and the research skills to the next generation.
I'm so glad that you chose geriatric oncology and that I was fortunate enough to come along when you were there.
Yeah, it's been a decade together. What a wonderful decade it's been.
I'm very grateful to you. I just know that all your other patients are as fortunate as I am. And I'm delighted that we're friends.
The honor is truly all mine.
Decades ago, when Deb Mayer began her career as an oncology nurse, a cancer diagnosis was discussed in a whisper. Few treatments existed to extend a patient’s life, and survivors were not a patient population the oncology community considered. Fast forward 40 years. The hard conversations about life and death no longer elude us. Mayer learned first-hand what it feels like for a patient with cancer to consider the worst – she too is a survivor. As the only nurse appointed to former Vice President Joe Biden’s Cancer Moonshot initiative, Mayer shares with friend and colleague, Kathy Knafl, why she lends her voice to the ever-growing group of conquerors in need of information and guidance on life after cancer. We hear from Deb first.
Decades ago, when Deb Mayor began her career as an oncology nurse, a cancer diagnosis was discussed in a whisper. Few treatments existed to extend a patient's life, and survivors were not a patient population the oncology community considered.
Fast forward 40 years. The hard conversations about life and death no longer elude us. Mayor learned firsthand what it feels like for a patient with cancer to consider the worst. She too is a survivor. As the only nurse appointed to former vice president Joe Biden's Cancer Moonshot initiative, Mayor shares with friend and colleague Kathy Knafl why she lends her voice to the ever-growing group of conquerors in need of information and guidance on life after cancer. We hear from Deb first.
When I started in oncology in 1975, there wasn't survivorship as a field, because people didn't live that long. And when they were diagnosed with cancer, it was just at the time where we were starting to talk about it and even name it. And tell people that they had cancer.
Because prior to that time, it was the whisper--
That's right.
We didn't tell people because it was bad to do. In 1975, the five-year survival rate for all cancer survivals was about 48%. So not even half of the people lived five years. So we did palliative care from day one for all of our patients. And it was, to me, all about symptom management. Because if you can't relieve suffering, you know, no matter how much time you have left--
Right.
But over time, we now have almost 70% of people live five years or more.
So did you call it palliative care back then?
No, we just called it care.
We just called it care. Yeah.
Yeah. Now very little care is done in the hospital. You can actually be diagnosed and treated and never be in the hospital.
Yeah.
And most of the care we have shifted to the family and the caregiver. Most of this is going on in the home. My analogy is, we get the snapshot, they do the video.
Yeah, you were involved in the moon shots cure cancer, and you might want to say a little bit what the moonshot was on.
Vice President Biden put together the Cancer Moonshot at the direction of President Obama, because of his son Beau and his brain tumor, as well as his interest in health care and cancer care. So they put together, working with the National Cancer Institute, a panel of 28 leaders and experts from around the country, and I was the only nurse appointed to that.
What I brought to the table was not only representing nursing and cancer nursing, because we're the ones that do all the work.
Yes.
You can develop the best pill in the world that's going to cure everybody, but if you can't get the patient to take the pill, and manage the symptoms related to the pill, it's not going to matter. I was also there representing the survivorship community, which now that we have made such progress in helping people live longer, there is now 15.5 million Americans who have had cancer.
And that's 5% of our population. And if you're cured or have no evidence of disease, then you're sort of left on your own to figure out what the rest is. And that's when the survivorship movement started building in the '80s and '90's to say, don't forget about us. We're living with the residual issues of having the diagnosis, whether it's physical or psychological, as well as the long-term and late effects of what we've done to them to get them there.
Yeah. I love the picture with you and Joe Biden.
I had my 15-second photo talk down, and I look up, and I'm like, oh, my, God, he's tall. And he's got gorgeous blue eyes. And it's like, oh, I think I'm in love.
It was one of my personal highlights.
Yeah, I did-- I guess I've always been, frankly, really impressed with your ability to make a difference on multiple fronts as an educator, as a researcher, as a clinician. Do you see any one of those as the driver?
Being a clinician drives everything.
OK.
Because my obligation to my patients of today is to learn lessons that make it better for the patient for tomorrow. And my whole career has been about improving cancer care. I need to share what I've learned with others, so that they don't have to learn those lessons over again.
So I thought maybe we should end up talking about the walking group.
We were so excited that you were coming as the associate dean for research at the UNC School of Nursing. We had established a walking group every Saturday morning, which was as much for social as physical. And so we walked by what we knew was going to be your house, and got up on the porch to look in the windows, because we weren't sure if you were there. And you and George looked back out.
Yes, we did.
And so that started it. And then you joined our walking group. And we've been doing it for almost 10 years.
Over 10 years-- we've sort of intersected for an hour every Saturday morning, have these conversations. I think you were already a survivor when I joined the walking group. Tell a story of your experience with cancer when I was diagnosed, my daughter was 15. And when I was having some pretty extensive surgery, there's always a risk with surgery, even though I had a good outlook and a good prognosis.
So I made sure my affairs were in order, to the point that I was asking a very good friend of mine, who my daughter really likes, if when the time comes, she would take my daughter for her wedding dress shopping. And to make sure that those kind of things were taken care of.
And my friend said, well, I'll take her shopping even if you're still alive.
And obviously that wasn't going to be an issue. But it makes you think about the future in a different way.
The Conquer Cancer Foundation's mission is to conquer cancer worldwide by funding breakthrough research and sharing cutting-edge knowledge. To learn more about the participants in this session and others like it, please visit Conquer.org/storycorps. Recorded and produced by StoryCorps, a national nonprofit whose mission is to preserve and share humanity stories in order to build connections between people and create a more just and compassionate world. Learn more at StoryCorps.org.
Matt and Dave Wiemer are identical twins, but the shared experience in losing their beloved father to brain cancer is starkly different. One brother became a caretaker. Miles away and unable to help, the other struggled with guilt. Five years after their father’s death, the brothers discuss the impact it had on their relationship. With humor and candor, they detail the resentment and frustration that cancer forces many families to face and share how they remain inspired by their dad. Matt and his family are passionate supporters of Conquer Cancer, and Dave is a member of the Conquer Cancer staff as well as a donor.
Matthew and Dave Wiemer are identical twins, but the shared experience in losing their beloved father to brain cancer is starkly different. One brother became a caretaker. Miles away and unable to help, the other struggled with guilt. Five years after their father's death, the brothers discussed the impact it had on their relationship. With humor and candor, they detail the resentment and frustration that cancer forces many families to face and share how they remain inspired by their dad.
Matt and his family are passionate supporters of the Conquer Cancer Foundation, and Dave is a member of the staff, as well as a donor.
I was working at a university, and I was meeting with a donor. The phone rang. I said, excuse me. I got to take this, and I stepped away. Then you told me, it's bad. I just remember you saying, it's very bad. It's brain cancer, and it's the worst kind.
It was a gorgeous, sunny day in May. And then the doctor came out and told us what the news was. And Mom and I were not sure what exactly that meant. And then to see my wife Sarah, the physician, literally throw her head into her hands on her lap and then start crying made me realize this was not something that was going to go well.
Do you think you resented me, going through all this, because I didn't have to be there to live it every day?
Well, not every day, and most of the time, no, but when he was in that ICU for Christmas break, I talked to you on the phone. And I said, you have to come help us. You have to get on a plane. We need you here. Your mother needs you here. And you didn't. And it took a long time--
To get over that?
Yes.
Well, I'm sorry.
No.
Do you think you could see how it was difficult to not be there, to not be able to help?
Yeah, 100%. It's physically and monetarily impossible for you to be there as much as I was there because I happened to live in the suburb next to them. At some point, he had stopped eating. And then a hospice person came and sat down with us and just said, we're looking at a week and a half.
And Mom did say, get on a plane, and I came in that weekend right before he died.
We were kind of shocked.
It did feel sudden.
It wasn't even a year. He collapsed May 13th with a stroke. He died May 1, 2012. After he died, I gave up all semblance of any kind of religious convictions. And so then, you have the great existential question of, then why are we here? And to look at someone like him, he was a teacher, and he taught 20 years. And to say, man, he had an impact on middle school kids. For me to look at that and say, that's why we're here, to try to have a positive impact on someone else's life, he did that.
I think we're both trying to make the world a better place.
I just finished my 13th year teaching high school, and I get way more sentimental at the end of the year. And part of it is just because it's the month of May. And so I always give my kids a speech the last day of school, and talk to them about who my dad is, and what he did, and why he would want them to do great things with their lives.
I tend to come back to his love of golf, and how we play golf together. We played, once he had passed away, the day of his memorial service. And that meant a lot to me. And every time I'm out there, I still feel a connection to Dad. I think that's finding those ways to feel like he's still part of your life.
You try to look for something in all of that time to remember him. And Dad hated the rugs that mom had by the front door, because he always slipped on them. And they had him in the gurney and were wheeling his body out the door, and it got caught on the rug.
Oh, my god.
And we just kind of had to laugh and say, wow, how fitting is that?
I love you, buddy.
I love you too.
The Conquer Cancer Foundation's mission is to conquer cancer worldwide by funding breakthrough research and sharing cutting-edge knowledge. To learn more about the participants in this session and others like it, please visit conquer.org/storycorps.
When grief is an occupational hazard, it’s hard not to bring work home. Lidia Schapira teaches doctors how to help patients approach the end of their lives. What kind of lessons did her children learn from a parent who regularly cares for and loses seriously ill patients? Lauren Goldstein talks to Dr. Schapira, her mother, the current Editor in Chief of Cancer.Net, and a Conquer Cancer donor about growing up in the shadows of cancer.
Lidia Schapira, an oncologist specializing in quality of life, talks candidly with her daughter, Lauren Goldstein, about how she managed work-life balance while caring for seriously ill patients and raising young children. We learn that she approaches the care of patients with the same dedication and attention she has for her family, and how at times, that was incredibly difficult.
Ms. Goldstein is a doctoral student in psychology at UCLA. Dr. Schapira is the director of the Cancer Survivorship Program at Stanford, a generous donor to the Conquer Cancer Foundation, and acts as the editor in chief for cancer.net, ASCO's patient information website, supported in part by the Conquer Cancer Foundation. Dr. Schapira begins this segment by sharing why she became a doctor.
I think I fell into being a doctor, in part, through identification with my dad, who was a wonderful, kind, compassionate doctor, and also because of my real desire to do something that would help people. But there was this inevitability of things spilling over, and the boundaries, I think, become very porous between work life and home life, especially when the work is so emotionally intense.
And specifically, I remember one holiday we had as a family in Prince Edward Island, when I was very heavily involved in grieving the anticipated loss of a very, very dear patient who was in the final weeks of life. And I just was so careful, I thought, not to have this spill over. And I just wondered if you remember back to that holiday, and if you could sense that something was going on?
I do remember that vacation. I remember it very well. I got the new NSYNC CD, and I listened to it probably 70 times in a week. And I did not know what was going on with you at all. When you were grieving, I honestly didn't see it.
That's reassuring for me in so many ways. It really is a balm to hear that. Do you remember any of the fun events, like the famous lunch in East Boston with a family that made the best meatballs?
Yes. This was a patient who, I think, was quite sick at the time.
Very ill, a lady who did not want to know her diagnosis, didn't speak a word of English--
Spoke no English.
--wanted to have us over for Sunday dinner.
Yep. And she made the best meatballs I've ever had. It was like an all-day meatball affair, the way that she prepared those. This was a moment that was presumably sad for you and some sort of goodbye in some way, a way to incorporate that personal relationship into the goodbye, maybe. I don't know how sick she was in that moment. But I know now that that was near the end of her life, and I missed it, because the meatballs were so good. [CHUCKLES] So I'm curious what you would say you're most proud of.
Most importantly and meaningful to me are the moments when I felt that my presence made a change in a situation that by my own ability to be there, either by connecting to somebody, by giving solace to a family, by making the right diagnosis, by providing access to a therapy that profoundly impacted on somebody's life, or just by accompanying and witnessing what was happening, that my being there actually helped. That is absolutely and by far the stuff that gives me the greatest sense of peace and purpose.
And then on a perhaps more intellectual level, when I felt that by virtue of a conversation or a talk or my modeling my behavior, a young physician got it, that they got something that was important that they had not seen before that perhaps had remained theoretical or abstract. But they got it, so perhaps my feeling is that mentoring is almost like an extension of parenting. It's almost as joyful as when your kids somehow get something that is so enormously important to you, and that they show you that they really understood it at a deep and lasting level.
I'm also curious what you would say you were least proud of.
It was when I had a meeting in Washington. We were living in Boston at the time. And it was 7:00 in the morning, and I was about to go out to the airport. And I remember Karen, Timmy's mom called and said she couldn't do carpool that afternoon. And I said, oh, yeah, yeah, that's fine. Mark was in third grade.
And I rushed out the door thinking that I would make alternate pickup arrangements for Mark. And I forgot. Then I went on to my lovely meeting and everything. And it wasn't until I was on the shuttle on my way home, and they said, we're about to take off, and without smartphones, and at that point, there was no way to communicate that I remembered that I hadn't acted on the information.
But I remember walking into the house that night, and both Mark and your dad gave me a look like, we don't want to hear from you. Your name is mud.
And I really had that image of juggling. And I felt that one of those little glass balls that I had in the air had just dropped and shattered. But fortunately, there were very few such moments.
The Conquer Cancer Foundation's mission is to conquer cancer worldwide by funding breakthrough research and sharing cutting-edge knowledge. To learn more about the participants in this session and others like it, please visit conquer.org/storycorps.
As a girl, Priscilla Brastianos’s mother told her stories of the grandmother she never knew: a medical student who diagnosed her own fatal breast cancer. The legend of her grandmother, who practiced medicine even in her final days, inspired Brastianos to become an oncologist and physician scientist. The death of Brastianos’s mother from the same disease – and the promise the young doctor made to her in her final days – drives her unwavering commitment to conquer it. The 2012 Conquer Cancer Foundation Young Investigator Award (YIA) recipient talks to mentor Evanthia Galanis about the personal and professional journey that honors her family and patients at every turn.
As a girl, Priscilla Brastianos' mother told her stories of the grandmother she never knew, a medical student who diagnosed her own fatal breast cancer. The legend of her grandmother, who practiced medicine even in her final days, inspired Brastianos to become an oncologist and physician scientist. The death of Brastianos' mother from the same disease and the promise the young doctor made to her in her final days drives her unwavering commitment to conquer it. The 2012 Conquer Cancer Foundation Young Investigator Award recipient talks to mentor Evanthia Galanis about the personal and professional journey that honors her family and patients at every turn.
So Priscilla, tell me about how you got into this line of work.
When I was very young, my mom told us about my grandmother in Greece. When she was 23 years old-- she was in medical school at the time-- they were learning how to palpate breasts on exam. And she palpated a breast mass and had just diagnosed herself with breast cancer. So she went on to graduate from medical school and then, even with metastatic breast cancer, practice medicine.
Years later, my mother had spoken to people from that region. And they all remembered my grandmother, even 20 years later, about the impact that she had on people's lives. So I grew up hearing my grandmother's story and being inspired by her story as a physician, as a mother, and wanting to be like her, wanting to emulate my grandmother. And so that's what got me interested in medicine and also in cancer.
And when I was a third-year medical student, my mother was diagnosed with breast cancer. And there we began the journey of her chemotherapy, her surgeries, her radiation. And I knew that I wanted to change the course of oncology because of the suffering that came with cancer. So that's what got me into cancer and oncology. It was my grandmother's experience and my mother's experience. And ultimately, my mother passed away of metastatic breast cancer recently. And her death is a reminder everyday that we need to do better for cancer. And so that's what drives me and motivates me every day.
So your work is both a personal and professional journey. What do you like most about what you do every day?
Being able to help a patient on any given day is the most rewarding part of what we do. Patients are incredibly selfless and generous. Often, they'll participate in studies that may not necessarily benefit them personally, but they know that they're helping the greater good. The patient's the strongest person in the room when we're seeing patients and their families, and they're stronger than all of us combined. Many patients are heroic in their resilience, in what they teach us. Their strength inspires me.
I would think that the legacy of your mother helps you to push just a little bit further--
Yes.
--That otherwise you would normally have.
One thing that I hadn't appreciated before was-- we had transitioned my mom to hospice. And hospice was actually one of the most beautiful times of our life. And so we had some meaningful moments that I carry with me every day.
The day before she passed away, we were laying next to her in her hospice bed. And she said that those few days in hospice were among the happiest in her life, with us, being surrounded by family. And at that point, she said that she had felt so much love from her family in that setting that she was no longer afraid of death, and that she knew that the love of her family was going to accompany her always in her next journey.
In oncology, talking about end of life, we often feel like we're giving up. But I have a new appreciation for end-of-life care now, that we're not giving up. We're transitioning to a different stage of care. It's made me a better oncologist.
What advice would you give to either young oncologists or medical students who are interested in oncology or interested in the path of combining research with clinical care?
So I always go back to advice that my mom gave, which is don't be afraid to be bold, and don't be afraid to pursue big ideas, and don't be afraid to follow your dreams and passions. So if there's an idea that you'd like to pursue in research or in medicine, go for it. And don't be afraid, even if it's not status quo.
In those hard days, what is that inspires you? What keeps you motivated to continue?
Two days before my mom passed away, she took my hand and my brother's hand. And she made us promise that we were going to find better treatments for patients with cancer. She made us promise that we were going to live our life to do better for patients. And both me and my brother made her that promise, that we were going to dedicate our lives to it. So when I have a tough day, I hear her voice. And I'm going to live up to that promise.
The Conquer Cancer Foundation's mission is to conquer cancer worldwide by funding breakthrough research and sharing cutting-edge knowledge. To learn more about the participants in this session and others like it, please visit conquer.org/storycorps.