AnCan has long been perplexed by the prostate cancer category “non-metastatic Castrate Resistant” or even “non-metastatic Hormone Sensitive”. If PSA is rising after primary treatment but prior to hormone treatment, something’s going on, however, ‘micro-metastatic’. It’s like being just a little bit pregnant!!
This paper considers a new category, PSMA Positive Biochemically Recurrent – PSMA+ BCR. We circulated the paper to our Brains Trust and reached out to Dr. Ravi Madan at the National Cancer Institute (NCI) with a couple of questions. Dr Madan offered to meet with us along with his colleague, Dr. Melissa Abel. What resulted was this REMARKABLE video that could present many of our recurrent and advanced AnCan (& non-AnCan) participants with one of the most mind-blowing videos many have seen in a long time,
DO YOU REALLY NEED TREATMENT??
As the venerable and highly respected Dr. Paul Schellhammer said in the meeting, “it’s like listening 15 years ago to the folks who began to promote active surveillance ( in first line treatment)” Dr. Madan and Dr. Abel have collected solid data from around 150 patients that suggests men with slow PSA doubling times can “play the long game” as Dr. Ravi calls it, and defer active treatment when their disease recurs.
PLEASE watch this astonishing presentation, listen to some excellent observations and questions, and consider how it relates to your own situation. And spread the word to others. Dr. Madan’s and Dr. Abel’s NCI clinical trial can be found at https://www.clinicaltrials.gov/study/NCT05588128. Don’t immediately assume you’re not eligible before speaking with them… but you’ll have to watch the video to get their contact information.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, 1/5/26
HAPPY NEW YEAR to all AnCan’s YouTube viewers. AnCan is closing out its Annual Fundraising Campaign. If you haven’t donated yet, consider the priceless value we bring . Please donate – especially if you watch our recordings and are not on our Mailchimp list. https://ancan.org/donate/
AnCan thanks the following sponsors for making this recording possible: Novartis, Johnson and Johnson, Telix, 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
HEADSUP – another long session!
Editor’s Pick:Like London buses, topics come in clusters this week – post-surgery recurrence, and monotherapy daro
Topics Discussed
Recurrence 3+ months post-surgery is confusing given medical reports; sitting on hands post 2017 RRP has dire cinsequences; more rapid recurrence requires PSMA scan for younger Gent; low T post treatment raises question whether to force it castrate; oxybutinin manages hot sweats… ARSI makes no difference; Gent considers going from doublet to mono; recently diagnosed denovo Mx man learns he’s 5+4; should he keep one Pluvicto session in reserve?; get a DEXA scan before starting bone stregthener; can a layman read their PSMA scan?; is he ready for mono daro?; should a FAP (Fibroblast Activation Protein Inhibitor) scan be considered?; PSMA needed as PSA rises post IHT; connections between prostate and thyroid cancer; Gent resumes doublet but doesn’t watch PSA – more concerned with duration?!?
Chat
RJ Smith (Seattle) sent: 6:17 PM
Hey Bob! Infusion tomorrow, so today is a good day. Sucked on a lot of ice for round #2 as you recommended, so mouth/taste was fine. Proctitis (mostly damage from ton of radiation) is pain in the a**, though–quite a bit of pain this time, but no pain today, so I’ll take it!
Bayer Patient Assistance Foundation could provide free Nubeqa (darolutamide) if you qualify. https://www.patientassistance.bayer.us/en/ I am on my third year in the program.
House guest, must go. Thanks to AnCan and Rick D for referral to Dr. Guancial in Sarasota. Had great visit last week. ADT working, PSA May 4.7, today .01, no side effects, Testro 50. Orgovyx working
Larry Schuller – Alaska sent: 7:06 PM
Orgovyx/relugolix pills and Firmagon/degalarix injections are both LHRH/GnRH ANTAgonists. In my opinion, superior to LHRH agonists, Lupron/leuprolide. Bot inferior (again, my opinion and personal experience) to trans-dermal estradiol (see the web site “estradiolinitiative.org” for more information or cantact me directly at ljschulr@alaska.net.
Bob Schwartz U.S.N. Venice, FL. sent: 7:07 PM
Jeffrey Green, you can also get the Embr Wave at Amazon (my wife got mine there).
Jim Marshall, Veteran, Alexandria, VA sent: 7:08 PM
Family commitment have to sign off…Happy New Year everyone
Jim Marshall, Veteran, Alexandria, VA sent: 7:36 PM
My solution for HOT FLASHES at night has been is even if the room is 55, I have a 12″ fan blowing directly on my face. This is done year round.
Paul Schomer sent: 7:50 PM
I am not, no, Jim
RJ Smith (Seattle) sent: 7:50 PM
NTD–will update next week on how Chemo#3 goes (docetaxel infusion tomorrow, fingers crossed).
Thomas Matica sent: 8:07 PM
Leaving the meeting. Thanks to everyone. Happy New Year.
Jim Marshall, Veteran, Alexandria, VA sent: 8:11 PM
Eric – When you are fatigued, go out and exericse despite the body telling you NOT!!!!
S. Datta sent: 8:14 PM
FAPI (Fibroblast Activation Protein Inhibitor)
Larry Schuller – Alaska sent: 8:18 PM
It is not crazy to want your testosterone back. Intermittent ADT can do that and it is showing promise as a tactic. Bipolar ADT (BAT) is a little crazier, but has some promise also. If you want to go wild, check out Dr Robert Gatenby’s work at Moffit in Florida. Intersesting stuff there.
Jay Mills Chatanooga- Though I didn’t follow the whole conversation, I heard you say something to the effect of, “I may have mets all over the place, in addition to what shows on PSMA.”
Barry Blomquist sent: 8:28 PM
Have to jump – thanks everyone. Happy New Year
Eric Curtis sent: 8:30 PM
Thanks all – gotta go
Jeffrey Green sent: 8:31 PM
Got to start winding down here. Thanks for all you guys. See you next time.
Len sent: 8:34 PM
Source is AI: Bidirectional Risk: Men diagnosed with thyroid cancer have a roughly 28% to 30% higher risk of later being diagnosed with prostate cancer compared to the general population. Conversely, men with prostate cancer are more likely to be diagnosed with thyroid cancer.
Robert sent: 8:35 PM
Thanks Len. I read the same thing.
dan-s sent: 8:49 PM
Thanks all… another good session. Have to sign off for the evening. Happy New Year…
Jay T in MN sent: 8:50 PM
My hospital was charging the insurance company about $20,000.
gary peters sent: 8:50 PM
I did not know this about thyroid C and PC. Thank you.
Jon McPhee Toronto sent: 8:50 PM
Do a PSA test once a month. Cheap. PSMA/PET is expensive and harder to get.
Jay T in MN sent: 8:51 PM
I “only” had to pay $1000 for my portion of PET PMSA
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Sep 23, 2025
UPCOMING PRESENTATION
Dr. JONATHAN EPSTEIN IS BACK for an AnCan webinar on Tue, Sep 30 at 8.pm Eastern!
“Interpreting Prostate Needle Biopsies in Today’s World”
Bx explained from early AS to advanced Pr Ca inc. AI – with lotsa time for Q&A.
Register at https://ow.ly/PpoX50WVsJ4
NEW monthy GAY & BISEXUAL MEN’S Prostate Cancer Group starting Tue, Oct 14.
Sign up at https://ancan.org/contact-us/
AnCan thanks the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, 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: Hiding in plain sight, a new tumor docs failed to mention. (bn)
Topics Discussed
Upcoming AnCan group; newly diagnosed with a spot on his spine — consider zapping both prostate and tumor; what’s happening with Medicare and telehealth?; a Pluvicto update after his first treatment; after focal therapy, docs kept quiet about a new tumor, and it may now be escaping the prostate; lots of metastasis, PSA in the thousands, but he got doublet therapy, not triplet; a 0.04 PSA rise isn’t worrisome; he’s offered Clomid to raise testosterone (why not just take testosterone?); massive sweating spells that far exceed hot flashes; prior mastectomy complicates planned radiation for sore nipples; thanks to John Maxwell for giving AnCan the proceeds of his poetry collection during September; great experience from Dr. Guercio in Rochester; ready to shift his care to a top NYC hospital.
Chat Log
Ben Nathanson · 6:16 PM
NY Times: In Chicago, a New Approach to Gay and Bisexual Men With Prostate Cancer https://www.nytimes.com/2021/12/07/health/prostate-gay-sex-cancer.html?unlocked_article_code=1.oE8.Ij-J.lRa7OMYAXY5h&smid=url-share Allen Edel: Gay men should never have a prostatectomy https://www.prostatecancer.news/2021/
AnCan – rick · 6:29 PM
Kevin courtney is the GU med onc
AnCan – rick · 6:29 PM
at UTSW that I ws truying to recall.
Alfredo in Houston · 6:31 PM
https://profiles.utsouthwestern.edu/profile/131906/kevin-courtney.html
Alfredo in Houston · 6:32 PM
https://www.houstonmethodist.org/doctor/eleni-efstathiou/
AnCan – rick · 6:39 PM
PROMISE Trial https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
Alfredo in Houston · 7:03 PM
https://www.uofmhealth.org/profile/2980/todd-matthew-morgan-md
AnCan – rick · 7:27 PM
Interpreting Prostate Needle Biopsies in Today’s World” with global expert Dr.Jonathan Epstein , Advanced Uropathology Register at https://ow.ly/PpoX50WVsJ4 – free.
Jim Marshall, Veteran, Alexandria, VA · 7:28 PM
https://ancan.us14.list-manage.com/track/click?u=ece3f3da90f82cb974b407396&id=9b15081950&e=7e455a27bb For Veterans Speaking Freely. Jim
Don Rogers · 8:08 PM
anastrozole 1 mg twice a week
AnCan – rick · 8:23 PM
casodex
Frank Ciambra · 8:35 PM
i just did my 7th pluvicto last wednesday i am recovering well and ave atrip planned to see my son and his family this weekend and will be jammig music tommorow night
Frank Ciambra · 8:38 PM
im going to see my son who recently retirrd from the teams in va beach mygrandsons have bb tornaments this weekend
AnCan – rick · 8:42 PM
Dr. McHugh, Dr. Rathkopf, Dr. Autio
AnCan – rick · 8:44 PM
geenitourinary (GU) medical oncologist
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Sep 9, 2025
UPCOMING PRESENTATIONS
MRI 2nd Opinions….. ProstateID solves the challenge It’s challenging. to get MRI 2nd Opinions… ProstateID solves it. Affordable & AI-validated Wed. Sep 17th at 6.30 pm Eastern in the AnCan Barniskis Room https://www.gotomeet.me/AnswerCancer Developer, Randall Jones, PhD explains the technology and its uses.
Dr. JONATHAN EPSTEIN IS BACK for an AnCan webinar on Tue, Sep 30 at 8.pm Eastern! “Interpreting Prostate Needle Biopsies in Today’s World” He’ll discuss Bx from early AS to advanced Pr Ca inc. AI – with plenty of time for Q&A. Register at https://ow.ly/PpoX50WVsJ4
NEW monthy GAY & BISEXUAL MEN’S Prostate Cancer Group starting Tue, Oct 14. Sign up at https://ancan.org/contact-us/
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, Blue Earth Diagnostics and Foundation Medicine
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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: Ice hockey Newbie wants to consider intermittent hormone therapyrd)
Topics Discussed
Does an AUS interfree with RT?; hockey player want to consider IHT; urinary issues post RT; anti-morphing strategies; PSMA helps find possible salivary tumor; constipation pain from opiates; blood transfusion helps; osteopenia may warrant Prolia; is sleep apnea the cause of cachexic symptoms?; is cycling OK during RT?; mono Nubeqa working well; B12 and magnesiun for restless leg; John Maxwell on Solo Arts Heal;
Chat Log
John Maxwell – Chicago sent: 3:11 PM
Last week I was blessed to be interviewed by Hannah on Solo Healing Arts where I discussed my prostate cancer journey and lifelong journey as a poet and my book “Hammering Nails” Find the links to the Interview and to buy my book above. All net proceeds from the sale of my book during September 2025 will be donated to ANCAN.
I’m at the start of my ADT journey. I have been on Orgovyx for 6 months. I plan to stay on for the full 24 months. When I do stop taking Orgovyx how quickly does my testosterone return?
John M — Guys on Orgovyx will recover T levels faster than those on Lupron/Eligard, etc. However, everyone is different and how fast your T levels recover will depend on your baseline T, how old you are, and how long you’ve been on Orgovyx.
AnCan – rick sent: 4:01 PM
John M …. the rule of thumb is twice the length of time you were on. It depends on age…. With orgo, it could well be shorter. It was shorter for me on Lupron – 9 mo. Should say the rule of thumb used to be…..
Paul D in Little Rock sent: 4:40 PM
Thanks everyone I have another meeting and have to sign off. See you again soon. I was able to sign up for the Promise tests, which are on the way. I appreciate the lead to that resource. Paul
sorry I had trouble logging in… another good mtg; but I have to leave as bldg is closing
Jeff Marchi – San Francisco sent: 4:59 PM
Low cortisol could cause fatigue
John M – Chicago sent: 5:09 PM
Link to my Solo Arts Heal ANCAN Podcast and biik purchase are above. Net proceeds from all book sales in September will be donated to ANCAN
AnCan – rick sent: 5:10 PM
CoQ10 for cramps Theraworx for leg cramps
AnCan Bill sent: 5:16 PM
I had a Karate Sensei that swore by mustard for cramp relief. Like the kind of mustard packets you get at a fast food joint. He recommended sucking one down when students got a cramp. He kept them in the Dojo. I don’t know if it was just the power of suggestion but it seemed to work.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Sep 1, 2025
UPCOMING PRESENTATION MRI 2nd Opinions….. ProstateID solves the challenge
Getting 2nd opinions is critical. It’s easy to find a medical 2nd opinion, and you can get your pathology reread by the best! But MRIs – that’s been challenging. Now there’s an affordable AI-validated option that’s proven very reliable* – ProstateID Join us on Wed. Sep 17th at 6.30 pm Eastern in the AnCan Barniskis Roomhttps://www.gotomeet.me/AnswerCancer Founder and Developer, Randall Jones, PhD explains the technology and its uses. Hosted by AnCan Advisory Board Member and prostate cancer peer, Cdr. Mike Crosby *Sensitiviy and Specificity in the mid-90% range
… and hold Tuesday, Sept 30th 8 pm Eastern for Dr. Jonathan Epstein. Title TBD and webinar link to follow.
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, Blue Earth Diagnostics and Foundation Medicine
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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: recurring themes – RT cystitis, HT fatigue and a young man with hi-volume 4+5 (rd)
Apologies for the profane expletive – it was aimed at T-mobile and Verizon who kept kicking me off the meeting.
Topics Discussed
Young man in Germany Dx with high volume 4+5; what’s the story on ‘Azo’ to control serious bladder pain?; oligo-Mx man faces upcoming SBRT on T2 and lymph nodes; will CT worsen radiation cystitis?; adaptive hormone therapy is explained and considered; fatigue resuming daro after IHT; gynecomastia after breast reduction; fatigue from orgovyx
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 26, 2025
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, Blue Earth Diagnostics and Foundation Medicine
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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: Bright hopes for estradiol patches to reduce ADT effects, from Dr. Paul. (bn)
Topics Discussed
A professor’s worry about hot flashes while teaching prompts many familiar suggestions — plus an unexpected one: an illuminating discussion of estradiol by Dr. Paul, who’s serious about seeing it get wider use; Marc V., starting chemo, shares a “week that’s been one of the most challenging in my life”; PSA relapse after April’s Pluvicto leaves him wondering — more Pluvicto? xaluritamig trial? alpha trial?; wrestllng with Orgovyx side effects — on top of severe back pain, sleep apnea, and multiple sclerosis — and he’s seeing the wrong cancer specialist; new research of muscle loss in cancer; muscle loss hits a patient in his 80s harder than one in his 60s; why get two DNA tests — germline and somatic — for his RB1 gene?; he’s wondering what to expect when starting ADT — and while experiences vary, nobody here is a fan.
Chat Log
Jon McPhee Toronto · 6:26 PM
What about estrogen patches?
AnCan – rick · 6:26 PM
soy isoflavones
John A · 6:27 PM
Jon, yes that’s partly what I meant by if simple measures don’t work consider hormone treatment.
John Maxwell · 6:29 PM
HOT FLASHES: I am having good success with the Embr Wave 2 wrist band reducing, not eliminating my hot flashes, especially at night. I am very happy with it.
Alain · 6:30 PM
Thanks John!
Frank Ciambra · 6:52 PM
Xalurtamig
Len Sierra · 7:15 PM
www.mskcc.org
Charles James Ryan, MD – MSK Genitourinary Medical Oncologist
480 Red Hill Rd, Middletown, NJ 07748
Len Sierra · 7:18 PM
Phone for Ryan: Call 646-392-1746
AnCan – rick · 7:23 PM
Activin-A , Think the researcher may be David Hyman at MSKCC
AnCan – rick · 7:24 PM
first-in-human phase I study of the Activin A inhibitor, STM 434, in various solid tumors.
Jon McPhee Toronto · 7:48 PM
Question: I am going to get a shot of Zoladex (goserelin). Apparently popular in Canada, but I never see it mentioned in US. Any idea why?
