AnCan thanks the following sponsors for making this recording possible: Novartis, Telix and Blue Earth Diagnostics.
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: Dr. Paul provides sage advice more than once but can’t prevent his E2 getting aced out by Veozah!
Topics Discussed
Treatment decision for newly Dx high risk, 72 yr old Newbie; Dr. Paul has thoughts on RT vs surgery; one of our Mods faces Tx decision for a single lymph node lesion; Dr. Paul comments further on surgical removal and also nerve sparing surgery; darolutamide and fatigue; urinary issues post-RT; Andromeda trial completed with a few more side effects; T comes back and PSA stays low post RT + HT; getting off daro to stay in ‘The Long Game’ study; should denosumab be capped off with a bisphosphonate/; considering the LEGION-100 SYNC-T trial… again; Veozah works a charm
Coordinator for Andromeda Trial Sophia Parmisano (she/her) Clinical Research Coordinator UCLA Dept. of Radiation Oncology Ph: (310) 267-3169 200 Medical Plaza, Suite B265 Los Angeles, CA 90095-6951
Bruce C sent: 5:27 PM
legion 100
Len Sierra sent: 5:27 PM
LEGION-100 Clinical Trial ClinicalTrials.gov ID Number: NCT06533644 This clinical trial is studying an investigational therapy called SYNC-T Therapy SV-102. It is a combination therapy that freezes a portion of a tumor and then infuses a drug directly into the tumor. The therapy is designed to activate the immune system and enable it to fight cancer throughout the body.
rick davis sent: 5:35 PM
Sat Sep 19h High Risk/Rec/Adv PrCa. Reminder…. The Abscopal Effect Done with Class!
Mark sent: 5:52 PM
Not tonight, thanks
Lymph node was not accessible
Danny Lankford sent: 5:54 PM
I will receive monthly liver enzyme testing
Bruce Schrimpf sent: 5:54 PM
Great session guys! I found it very good this evening!
(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!”
AnCan thanks the following sponsors for making this recording possible: Novartis, Telix and Blue Earth Diagnostics.
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: Does the PROTEUS trial (RRP + doublet) set a good example?
Topics Discussed
Does surgery with doublet (PROTEUS trial) make sense for 72 yr old; Dana Farber visit raises questions about ‘diffuse’ cells and PSMA tracer agents; sensitive PSA test needed post surgery; VA approves daro but too early for Truqap; hormone resistance post triplet raises RLT vs chemo vs ???; Cu67 SAR-bisPSMA alternative to Pluvicto; switch to local GU PSMA for ease of treatment; small peritoneal lesions double in size to 4mm over 5 years – treat or not?; drug holiday success – PSA declines and T rises 🎉
Chat
Carl – Indiana sent: 6:12 PM
Tin Caps are welcome
Len Sierra sent: 6:40 PM
I’m at my son’s house in Maryland using his computer. Not sure what’s going on. I’ll just listen
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Oct. 27, 2026
AnCan WEBINAR Thu. Oct, 29 @ 8pm Eastern -” What’s new in radioligand therapy… and how to access it” w. Drs. Mike Hofman and Frankis Almaguel. Register https://short.do/jFCa8I
AnCan thanks the following sponsors for making this recording possible: Novartis, Telix and Blue Earth Diagnostics.
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: Should minor presence of neuroendocrine cancer from lymph biopsy be a concern? And of course Dr. Paul on NCCN’s E2 approval
Topics Discussed
Inherited mutation makes RRP follow up protocol less clear; what comes after success with triplet but what comes next?; GG5 Newbie does 24 months doublet and wants to know likelihood of recurrence; Ki67 indicates slight presence of neuroendocrine cancer – implications; creatine helps with muscles and fatigue; leg lymphedema bothersome; is E2 available with salvage RT; how quickly does T return with E2; talking NCCN E2 approval with Dr. Paul; can E2 replace Prolia?; over-intensification may have caused heart issues; addressing hot flashes; maintaining exercise in the face of doublet HT; octogenarian does well post triplet and drug holiday; with 2+ bad boy mutations, who’s the best GU med onc to QB care?
Thank you for your help and input. I need to go, but look forward to connecting in the future.
Brian Haack – Eagle, ID sent: 4:28 PM
How long after drug holiday (9 months ADT doublet tx) should I wait until getting blood work? I’m on my 2nd recurrence btw. Don’t want to interrupt the great dialogue
Jim Marshall, Vet Sup Grp. Moderator sent: 4:32 PM
I get blood work every month now for 9+ years, the last 4+ years on Holiday. Kaiser permits it. Hopefully getting PSA test during the holiday to know when it starts to rise.
George Kander sent: 4:32 PM
thanks guys i have to go. see you next week
Len Sierra sent: 4:45 PM
Just a counter opinion: Clinical trials in patients with colorectal or prostate cancer found that creatine supplements generally failed to improve muscle mass, physical function, or quality of life during treatment.
Sam Kaufman (Oakland CA) sent: 4:47 PM
Sorry I cant stay until Im called. My questions can wait two weeks.
Jim Ekrut, Fort Worth TX sent: 5:03 PM
Thanks for another helpful and informational session!
Brian Haack – Eagle, ID sent: 5:05 PM
Gotta bounce… great discussion
TonyFig sent: 5:07 PM
Great meeting. See you next week
Frank D sent: 5:18 PM
Thanks for great meeting. Very helpful!
Bob Schwartz, USN, Venice, FL. sent: 5:19 PM
Another good mtg., have to go.
“Thomas” Matica sent: 5:21 PM
Great meeting. Dinner is on the table. Next time. Peace.
Erectile Dysfunction After Prostate Cancer Treatment: What Men Should Know
Sexual side effects don’t always get the attention they deserve when men face prostate cancer treatment decisions. At AnCan, we believe men should be as fully informed as possible about these potential consequences and their impact on quality of life. We hope this information encourages men to have these important conversations with their treatment teams before making decisions. – Stuart Jordan
Erectile Dysfunction After Prostate Cancer Treatment: What Men Should Know
Dr. John Mulhall, a leading specialist in male sexual medicine at Memorial Sloan Kettering, warns that men often begin prostate cancer treatment without fully understanding its potential effects on erections, sexual desire, orgasm, and intimacy. His central message: Protecting sexual function should begin before treatment, not after problems develop.
Surgery vs. Radiation: Different Timelines
Even with nerve-sparing surgery, erectile dysfunction frequently occurs immediately. Recovery can take 18–24 months, depending on pretreatment erectile function, the extent of nerve preservation, and surgeon experience.
After radiation, erections may initially remain intact but deteriorate during the second and third years due to progressive blood vessel damage caused by the radiation. Mulhall observes that by approximately three years, erectile dysfunction rates following nerve-sparing surgery and radiation without hormone therapy may become roughly comparable.
The Added Impact of Hormone Therapy
Androgen deprivation therapy (ADT) suppresses testosterone, potentially reducing sexual desire, impairing erections and orgasms, and contributing to deterioration of erectile tissue.
Testosterone may take months or years to recover after ADT ends, and some men never regain their previous levels. Mulhall urges patients to understand ADT’s expected cancer-control benefit and whether a shorter course might be appropriate.
Why Early Rehabilitation Matters
Mulhall warns that prolonged periods without erections may cause irreversible changes in penile tissue, including fibrosis.
His rehabilitation approach aims to maintain regular erections while nerves recover, using medications such as tadalafil (Cialis) or sildenafil (Viagra), or penile injections when pills fail. However, evidence that these approaches restore long-term spontaneous erectile function remains limited.
Other Important Considerations
Recovery depends partly on age, pretreatment erectile function, and conditions such as diabetes, cardiovascular disease, sleep apnea, and low testosterone.
Sexual function involves more than erections. Orgasm may remain possible despite ED, although its intensity or sensation may change. Performance anxiety can complicate recovery, while alternative forms of intimacy can help sustain relationships. Penile implants are an option when other ED treatments fail.
What Men Should Do Before Treatment
Mulhall strongly recommends that men concerned about preserving sexual function consult a sexual medicine specialist before beginning prostate cancer treatment, rather than waiting until problems develop.
Questions to Ask Before Treatment
Given my health and current erectile function, what can I expect at one, two, and three years?
With surgery, how much nerve sparing is possible, and what are my surgeon’s outcomes?
With radiation, what is my risk of delayed ED?
With ADT, what’s the added cancer-control benefit, and how long could side effects persist?
What rehabilitation and sexual medicine support is available?
How might treatment affect sexual desire, orgasm, ejaculation, penile length, and intimacy?
The essential takeaway: Men should understand their potential sexual side effects and have a plan to preserve sexual function before choosing prostate cancer treatment—not afterward.
Source: This article summarizes an interview between Dr. Geo Espinosa and Dr. John Mulhall on the Dr. Geo Prostate Podcast. Listen to the full episode at https://dr-geo-prostate-podcast.captivate.fm/. Our thanks to Low/Intermediate PrCa Moderator, Stuart Jordan for writing this up stuart@ancan.org
AnCan thanks the following sponsors for making this recording possible: Novartis, Telix and Blue Earth Diagnostics.
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: E2 doublet discussion – closely followed by integrating psilocybin into HT doublet!
Topics Discussed
Newbie diagnosed 4 years back with PSA @ 4000 & BRCA+ might consider a different doublet -or PARP; Newbie responds but has 4 consecutive negative PSMA scans – consider Axumin; could E2 doublet be an option?; PTEN just indicated; 2 negative Bx confirm our hunch Gent is Mx ; can experienced user integrate psilocybin into his HT to treat depression; monotherapy daro works exceptionally well – but must make decision on ‘Long Game’ trial; how long to stay on mono daro?; 1st Pluvicto rings PSA down a little – what to expect next?; Dr. Guancial uses fewer tests making Gent anxious – T/W her!
I want to ask Dr A if I can do the psilocybin therapy again while receiving radiation
Bob Schwartz, USN, Venice, FL. sent: 6:33 PM
Danny, we’re all here for you brother.
Gary Martin sent: 6:42 PM
RT can impact bone marrow–lowering blood counts and possibly increasing fatigue. This happened to me–lowering blood counts further to below-normal–on top of impact of triplet prior to RT.
Read that ice packs have been shown to limit the effects of Pluvicto on salivary glands–study in Europe. Don’t have a reference to study yet.
Hank Zajic Springfield VA sent: 7:10 PM
Good night all. Thank you for the discussion. out of battery here. Hank
