A Collaborative Approach to an Uncommon Cancer

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.