(first published on AnCanSpeak substack; subscribe for free)
Less than 50% of Patients trust their Providers. Now that’s a handpicked statistic from a survey conducted during Covid and published in JAMA Network in 2024. Healthcare professionals amongst our readers may have grounds to push back. That said, AnCan’s frequent experience from virtual conversations in our daily groups corroborates that anecdotally perhaps half our participants doubt the medical advice received. Our own 2024 survey backs that up. From our GU ASCO 2026 abstract4:
Seventy percent brought information from AnCan to their providers, 49% added new providers, and 40% changed their lead provider. Over half (54%) reported AnCan influenced their treatment path.
That doesn’t bode well for a trusting Patient-Provider relationship!
“Medicine is characterized by an inherent asymmetry of information and power between physicians and patients.” And goes on to say: “Demonstrating trustworthiness and restoring trust… requires reconsidering the balance of power between patients and health care professionals.”
This brings to mind a cartoon AnCan has employed in presentations:
Both JAMA pieces agree that our system is broken. They recite a fact that AnCan has previously noted… on average Providers interrupt Patients after a median of 11 seconds. In front of Providers, Patients can’t even begin to collect our thoughts, never mind express them.
The article troops out a whole bunch of remedies. Starting with teaching HCPs how to listen, it moves to improving health systems so you actually see your doc – not a surrogate practitioner, encouraging longer patient visits – so Providers have time to listen, and address mis- and disinformation. On a more grandiose scale, the article points out that differences in wealth, insurance status and education also influence Patient-Provider trust levels.
The closest either article comes to balancing the scales between Patient and Provider is to say:
Empowering patients through patient education and skill building, increased transparency in care, and shared clinical decision-making would also increase the collaboration in physician-patient relationships. Mutual partnerships between patients and their physicians may foster more stable patient trust instead of requiring patients to take a more tenuous leap of faith.
Noble words, but who is to take on this Sisyphean task?
AnCan likes to think we lead the way. Name one other organization whose mission is to make you your own best advocate. Already this week we fielded one call from a longtime legal Volunteer whose trust in an inestimable Medical Institution was violated because the Provider they spoke to committed the inexcusable and cardinal sin of simply failing to read the file. Or another Participant, a Medical Provider himself, who needed advice because an Institution was knowingly yet improperly billing him.
Being your own best advocate may not fully restore trust in our health system, but it goes a long way to leveling the playing field. It certainly improves patients’ self-esteem and in doing so, makes us feel immeasurably better.
rick davis rd@ancan.org
References
Perlis RH, Ognyanova K, Uslu A, et al. Trust in physicians and hospitals during the COVID-19 pandemic in a 50-state survey of US adults. JAMA Netw Open. 2024;7(7):e2424984. doi:10.1001/jamanetworkopen.2024.24984
Even little me speaks to a lot of people, some of whom have Prostate Cancer. And advanced Prostate Cancer and many of them are not acting as their own best advocate. It’s very important that people learn to take control and own and deal with their disease.
Maybe it’s a little long winded and boring, but it took me a year or 2, into my stage, 4, Prostate Cancer. Before I really took control and had one of those aggressive and idiot doctors who told me” i am a ph d in oncology, and you are a beginning student, ” and he tried to dictate to me everything, including his team of radiological, oncology, and his drugs and his procedures, and I watched a number of his patients who I know personally, because I worked with them die without doing all the things they could. Anyway, after a year two I was seeing consulting with good doctors and dana farber and at sloan, and I switched from advisors to sloan and very happy with my oncologist now…. It is very important for people to come to visit. Taking ownership and managing as their own number one, advocate. Okay, I’ll stop boring you because my doorbell is ringing. Thank you bye!”
For the longest time, AnCan has been trying to figure out how to publish some of the brilliant, creative, insightful, or just plain informative posts that populate our Reminder/Newsletters, Blog Posts, website, and other nooks and crannies in our AnCan world.
Some may recall the request we made a 3 years or so ago for people to edit a compendium of AnCan writings that we could publish. Substack appears to have met that need, along with Gracie Evans, whom we’ve hired to create and curate the site, AnCanSpeak. Instructions are to take her candle into those aforementioned nooks and crannies to ferret out our best work. Gracie comes to AnCan with a background helping patients tell their own stories.
Here’s Gracie’s announcement:
We’re excited to share that AnCan now has a home on Substack! Our new publication, AnCanSpeak, is where you’ll find stories from our community, updates on our programs, and resources rooted in our mission of support, education, and advocacy, all delivered straight to your inbox. Whether you’ve been with us from the start or just recently joined, we’d love for you to be part of this next chapter. Subscribe today at ancanspeak.substack.com, and feel free to share it with anyone who might find comfort, connection, or helpful information there.
If you have any favorite pieces that you’ve stashed away, please let Gracie know at gracie@ancan.org . Or if you have any pieces you’d like us to consider relating to chronic conditions or AnCan, please send them to Gracie. Maybe some of the pieces our AnCan writers have created.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 25, 2026
Substack is coming to AnCan… or maybe AnCan is coming to Substack. We’ll be posting the best of all our Reminders. Watch our for more details.
COMING IN SEPTEMBER… AnCan Heart Group – new support group for all things cardio and open to all! To sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to rd@ancan.org.
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: We burst his bubble that advanced prostate cancer can be cured! 😕
Topics Discussed
Newbie #1 skirts triplet but discuss debulking; Newbie #2 encouraged to rethink surgery decision; PSA falls from HT and RT right ahead; whaddya mean, there’s no cure!?!; RT ‘torture’ (really???) vs ADT for life; GUMO will consider E2; weird disease needs a 2nd opinion; Orgovyx not worth $700 for this Gent; walking helps restore muscle loss; Orgovyx produces different hot flashes; changing ARSI before Pluvicto may rock the boat; personal evaporative cooler demo
Chat
AnCan Barniskis – rick sent: 3:10 PM
Dr. John is at a medical appointment, and Len is on his way home.
AnCan Barniskis – rick sent: 3:28 PM
Orgovyx
AnCan Barniskis – rick sent: 3:35 PM
in that case, we won’t add you to the heart group unless you wish?
Here is a more recent reference https://mydoctor.kaiserpermanente.org/mas/news/a-new-era-in-prostate-cancer-surgery-retzius-sparing-technique-delivers-life-changing-results-2941449
Jim Marshall, Vet Sup Grp. Moderator sent: 4:07 PM
Did 5 years of ADT + Abiraterone and tolerated it quite well. jim
Alfredo in Wimberley, TX sent: 4:09 PM
What did the recent JAMA Oncology ProtecT study show? A 2025 secondary analysis looked at 15-year outcomes in men with localized prostate cancer and compared those with cribriform-positive disease to those with cribriform-negative disease. I The findings were important: Among men with cribriform-positive prostate cancer, the 15-year risk of metastasis was 25% with active monitoring, 26% with surgery, and 8% with radiotherapy plus short-term hormone therapy. Among men with cribriform-negative disease, the metastasis rates were much lower: 7% with active monitoring, 4% with surgery, and 3% with radiotherapy. Overall, cribriform-positive disease was linked to a significantly higher risk of metastasis, while outcomes for cribriform-negative disease were favorable across treatment groups.
Bill Lawler sent: 4:45 PM
Dr. Atish Choudury, Dana Farber
Bill Lawler sent: 4:49 PM
What time?
Jeff Marchi – San Francisco sent: 4:49 PM
3pm pacific
Robert sent: 4:53 PM
My update is not critical I can wait til next week.
AnCan GU ASCO26 survivorship poster: participants strongly endorse our Groups
For release on Monday, Feb 23, 2026
AnCan Foundation strongly believes we run the best support groups available!! We can now release the first results of our 2024 AnCan Participant Survey that confirms that our participants think so too. This first batch of results is taken from almost 300 prostate cancer responses at all levels of disease.
99% of respondents would recommend AnCan Groups
66% improved Quality of Life – 83% noted reduced stress; 62% improved nutrition; 56% increased exercise
88% advocated better for themselves and AnCan influenced over half (54%) the treatment paths
47% made new friendships – AnCan’s personal favorite since this extends support well beyond our Groups
If you’re attending GU ASCO26 , please stop by our poster on Friday, Feb 27 to meet Dr. John Antonucci, discuss these astonishing results and the AnCan method, and pick up a flyer of the poster.
Evaluating the impact of virtual peer-led support groups on prostate cancer survivorship: the AnCan experience.
John Antonucci*, Boykin B. Jordan, Anita Oppong, Richard Davis
Abstract Number: 265
Poster Board Number: A23
Session Title: Poster Session B: Prostate Cancer and Urothelial Carcinoma
Date and Time: February 27, 2026, 11:30 AM-12:45 PM; 4:45 PM-5:45 PM (PST)
Background: Comprehensive prostate cancer (PCa) survivorship requires more than just clinical care, including education, psychosocial support, self-advocacy, and lifestyle guidance—needs often unmet by traditional oncology visits. Virtual peer-led support groups, such as those offered by the AnCan Foundation, offer accessible, real-time platforms for patients to share experiences, receive guidance, and foster community, regardless of geography. This study evaluates the impact of AnCan participation on factors known to be associated with a better quality of life (QOL) among PCa survivors.
Methods: A web-based survey was administered in 2024 to PCa survivors who attended or expressed interest in AnCan meetings. Respondents (N=294) provided demographic information and rated AnCan’s impact on QOL, peer support, self-advocacy, and satisfaction. Data were analyzed to assess the subjective influence of AnCan’s virtual support model on survivorship.
Results: (2021 results are in brackets for comparison.) Most respondents were in their 60s–70s (75%), highly educated (82%), and 55% had incomes over $100,000. Eighty-three percent had someone in their lives they could rely on and with whom they maintained regular contact.
Nearly all (97%) found AnCan meetings helpful for disease understanding, learning options, and well-being. Sixty-six percent reported improved QOL; 83% [50%] noted reduced stress; 62% [38%] improved nutrition; and 56% [58%] increased exercise. Satisfaction was high, with 99% recommending AnCan.
AnCan involvement enhanced self-advocacy (88%), improved patient-provider communication, and improved decision-making. Seventy percent brought information from AnCan to their providers, 49% added new providers, and 40% changed their lead provider. Over half (54%) reported that AnCan influenced their treatment path.
Socially, 55% [43%] connected with peers outside meetings, and 47% made new friendships.
Conclusions: Survey responses indicate that the AnCan virtual peer-led model, to be described in the poster, meaningfully increases patient knowledge, empowers self-advocacy, reduces stress, and fosters healthy behaviors, improving quality of life for PCa survivors. We advocate for integrating such peer support into NCCN, AUA, and ASCO survivorship guidelines.
