On June 5th, the third day of the 2022 International Anal Neoplasia Society (IANS) Scientific Meeting in New York, a panel of brave and outspoken thrivers shared their experiences with the assembled medical experts, in a session entitled. “Rare and Misunderstood: Ten Years Later - Narratives and Perspective on the Anal Cancer Experience.” The session was led and facilitated by Patient Advocate at IANS, Mary-Jo Murphy.
Daun R., Steven P., Dr. Stephen W., John K., and ACF Executive Director and Co-Founder Justine Almada joined Mary-Jo to give testimony of their journeys and outline steps for the future.
Mary-Jo, herself an anal cancer survivor, began the talk by introducing her fellow speakers and framing the conversation. She made it clear that she wanted all voices of the anal cancer spectrum to be heard, and noted with both pragmatism and optimism about how far the field still needs to go.
The panel started with Daun’s exceptionally candid recalling of her experiences with precancer. Her story worked to remind all those assembled that screening and treatment for any HPV-associated malignancy—not just cancerous ones—can be devastating and are in dire need of improvement. From there, Steven Post detailed his equally grueling experience dealing with anal cancer, on top of the additional isolation caused by the Covid pandemic. Steven was honest about his struggles with mental health—which had impacted him prior to diagnosis and which he continues to struggle with to this day.
Married thrivers Dr. Stephen Weitzman and John Kneapler followed, each with their own perspectives on being longer-term thrivers. Stephen shared his experience of enduring difficult and long term anal cancer side effects and his view going from physician to patient. John was prompted to learn more about anal cancer by his partner’s diagnosis and shared his journey finding a doctor who would treat his anal precancer. Both John and Stephen supported each other through the cancer diagnosis and recovery process, including painful career upheavals.
Finally, Justine Almada shared the story of her own mom’s anal cancer journey, who was diagnosed at 51 with stage IV anal cancer. In their mom’s name, she and her siblings started the Anal Cancer Foundation to end anal cancer and improve the lives of those affected by it. Justine put forward their vision for ending the disease and called on everyone gathered to join together and RAISE their game.
Her call for RAISE means that we, collectively:
Refer to comprehensive care, both during and after treatment
Advocate for screening
Invest in research for new treatments
Stop the Stigma with connection and community
Ensure early and accurate diagnosis
These were raw and honest first-person stories from people who have been through the isolating, confusing, and painful experience of anal cancer and precancer.
Many of the thrivers had positive experiences with—and thanked—several experts in the room, despite the difficult side effects they still deal with from treatment. They gave no-holds-barred details on what had happened to them and how their lives had been changed by anal cancer and precancer. Thrivers asked that the assembled doctors advocate for complete and early vaccination, entreating them to not lose connection with the human side of patients, being open to learning from them too.
The assembled researchers, providers, and other professionals were clearly extremely moved by the stories the patient panel shared. During Q & A, they expressed their gratitude. Several, like Dr. Michelle Khan of Stanford, asked the panel their perspectives on what could make pre- and post-treatment surveillance easier and better for patients.
The road ahead in anal cancer prevention and treatment improvement is long, but the scientific meeting and patient panel made it clear that no one is in this alone. Let’s thrive on, together!
