About five years ago, I was invited to the American Society of Clinical Oncology Genitourinary Cancers Symposium as the first patient to speak their assembly of 2,000 doctors and other professionals.
I was a stranger in a strange land.
This is the time when the distinguished doctors forgot me on the stage, and I grabbed the microphone to shame them for not listening to patients. I went on an unplanned seven-minute rant.
This led me to become an advocate for active surveillance, a then-emerging and too often ignored strategy for monitoring low-risk to favorable intermediate-risk prostate cancer.
I making a return engagement--virtually--to ASCO GU as a “citizen scientist” representing AnCan in two studies.
The first abstract looked at surveys of men with all types of prostate cancer with subset of 165 men on active surveillance from the AnCan, ASPI (Active Surveillance Patients International) and Prostate Cancer International email lists.
AnCan issued a news release tonight about the publication at ASCO of an abstract and poster relating to the research on the role of support groups:
AnCan Foundation is honored to announce its Abstract #58 Evaluating The Contribution of Virtual Peer-Led Support to Comprehensive Prostate Cancer (PCa) Care: The AnCan Experience together with a virtual poster has been selected for the ASCO Genitourinary Cancers Symposium, Feb 17-19, 2022 in San Francisco.
AnCan’s founder, Rick Davis, who innovated virtual peer-led support groups back in 2010. He recognized the potential of peer advice as the best information a patient could find. He said AnCan’s 2021 research confirms what the peer leader knew intuitively.
Neuroscientist Herb Geller PhD, the abstract’s lead author, highlighted key research findings, “Our research indicates that peer-led groups don’t just improve quality of life around the things we can control like diet, exercise and stress. Eighty percent of our participants feel the groups make them better advocates for themselves, and well over 60% take information gleaned back to their healthcare teams.”
While this poster is featured in the Advanced Prostate Cancer track on Feb 17, AnCan is proud of its work to establish the stature of the low-risk Active Surveillance (AS) protocol and includes its AS findings.
Co-author and AS Advocate, Howard Wolinsky, of TheActiveSurveiller.com, said: “Sixty-eight percent of our AS participants told us the Groups made them better advocates and 27% reported lower levels of anxiety - that’s a major difference. Active surveillance has been the Rodney Dangerfield of prostate cancer – including our study at GU ASCO recognizes AS patients.”
Rick Davis, the founder of AnCan and a prostate cancer survivor, says the research demonstrates the power of patient communities on outcomes: “I realized the power of peer-led support groups from my own treatment. Bringing them to a virtual platform 10 years before anyone had ever heard of COVID-19 and Zoom meetings, made peer support available to those compromised by geographical, physical and social issues. Recognition by ASCO GU is a big step in legitimizing AnCan’s work for all peer-led support.”
(In the next few days, I’ll share more data from the survey we conducted about a year ago.)
As an AnCan and Us TOO (Now ZERO) rep, I participated in another poster and abstract accepted by ASCO GU.
Alicia Morgans, MD, of Dana-Farber Cancer Institute and Harvard Medical School, was the lead author of the study.
This was a digital survey completed by more than 15,000 patients with prostate cancer provides valuable insights into the patient experience and reveals potential geographic differences in screening rates and therapeutic approaches in Germany, the United Kingdom, and the United States (Abstract 16).
The survey was of 15,000 patients. I simply asked researchers if this large survey contained any data on men on Active Surveillance. There wasn’t much.
The researchers had ignored it, but I persuaded them to extract and use the information on AS from the U.S., U.K., and Germany.
They found in their study population: “Prostatectomy was the most common therapy for patients with nonmetastatic prostate cancer in Germany (71%) and in the United States (57%), whereas in the United Kingdom, 48% of patients received radiotherapy and 41% received prostatectomy. Rates of active surveillance were also lower in Germany and in the United States than in the United Kingdom, at 6%, 9%, and 14%, respectively. Use of chemotherapy was rare (< 2%) for patients with nonmetastatic prostate cancer, regardless of location.”
It’s all a step in the right direction for AS. Respect at last.