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.