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.
As some of you may know, the liberal telehealth rules to conduct medical appointments remotely that were enabled during Covid, sunsetted late last year. AnCan was upset and vocal that many of our patient advocacy organizations active on The Hill did not campaign more widely to extend it. Organizations like ZERO (prostate cancer) have significant and expensive government relations groups precisely to address such issues on behalf of us patients. AnCan had to bring it to ZERO’s attention to move the ball at a time when ZERO’s high paid CEO was self-admittedly sleeping on the switch.
Telehealth was temporarily extended for those living in rural areas. Then one of our newly minted prostate cancer Moderators, David Sharpe, brought it to AnCan’s attention that legislation was passed on Feb 3, 2026 that has extended comprehensive telehealth through the end of 2027. We asked David to blog its welcome return to wider availability and tell his story around telehealth – thank you Mr. Sharpe!
Medicare Telehealth Coverage Is Extended
The federal government has restored Medicare coverage for telehealth until the end of 2027. That means you can now possibly consult with your doctors online rather than having to meet with them in-person.
Why did I say possibly? Because state medical licensing laws still apply. Often, they can undermine your doctor’s ability to join you on the call. Here’s why: (Don’t construe the following comments as legal or medical advice. This is general information only.)
Telehealth consultations are easiest to arrange when a patient and doctor are in the same state. For instance, if you live in Springfield, Illinois, and want to have a virtual chat with an oncologist in Chicago, no legal impediments are likely to stand in your way.
Things can get tougher if the doctor practices in another state. Physicians are typically required to be licensed in the state where the patient is physically located during the consult. Therein lies a common problem: the doctor is licensed in one state, and you’re in another.
But loopholes exist. According to the Center for Connected Health Policy (CCHP), “A few states have licenses or telehealth-specific exceptions that allow an out-of-state provider to render services via telemedicine in a state where they are not located, or allow a clinician to provide services via telehealth in a state if certain conditions are met (such as agreeing that they will not open an office in that state). Still other states have laws that don’t specifically address telehealth and/or telemedicine licensing, but make allowances for practicing in contiguous states. . . .” For specifics about your state’s rules, explore CCHP’s handy state-by-state guide: https://www.cchpca.org/topic/cross-state-licensing-professional-requirements/.
Despite those exceptions, many physicians and medical centers require patients to be in the same state as the doctor during telehealth appointments. I wish I’d known that last year, before trying to set up virtual consultations from my home in Portland, Oregon, with Fred Hutch (Washington), UCSF, City of Hope (both California), and MD Anderson (Texas0—all of whom turned me down. Oregon Health & Science University (OHSU, Oregon)) would have refused, too, if I had been in any other state.
But some physicians and hospitals were more relaxed about it. Despite remaining in Portland, I wrangled a telehealth visit with a UCLA specialist. Two AnCan buddies of mine in Oregon and Arizona did so as well. I had even better luck with out-of-state doctors in community practices. Two agreed to confer with me online, and one declined.
If you live near—but not in—the state where your doctor practices, perhaps the easiest option is to make a run for the border. One AnCan member has adopted that strategy as a convenient means of communicating with his faraway medical team in an adjacent state while also satisfying the legal requirements. To have that meeting, he travels a few miles from home to a casino just across the state line; the casino lets him conduct telehealth consultations there. That approach shaves hours off what would otherwise be a protracted road trip to talk with his doctors face-to-face. # # #
Living with Visual Snow – a Therapist’s Perspective with Dr. Paula Hechinger
“My approach to Visual Snow Syndrome was born from my own journey from being a depressed and isolated mother of two to becoming a resilient psychoanalyst. Today, I not only help individuals navigate VSS but also support those facing a wide range of mental health challenges, including depression, bipolar disorder, anxiety, borderline personality disorder, trauma, and more. What once felt like a limitation became the foundation of my purpose to guide others toward healing with empathy, depth, and lived understanding.” -Dr. Paula Hechinger
Join us for a special presentation with Dr. Paula Hechinger, a psychoanalyst who is living with Visual Snow Syndrome. She shares her personal journey, insights, and practical tips for managing VSS. Click Here to view her personal testimony and presentation.
For a list of resources on Visual Snow Syndrome (VSS), click here.
