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.
$200 for a 60min interview. Must be mHSPC or mCRPC; 40-75+/-; NOT have used Talzenna, Xtandi or Orgovyx. Reach out to Jason at 773 383 9090 jturner@flinceresearch.com. 15 needed. Indicate you are via AnCan and let us know if accepted (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: PSA rockets to 186 and bone mets are found 5 months after prostatectomy; AND, self-advocacy pays off!
Topics Discussed
Recurrence (salvage) RT success but Newbie is anxious; BRCA germline Newbie in treatment at MSKCC; PSA skyrockets right after surgery and mets are found; treatment doing its work and GU med onc confirms path; great experience with AnCan Advisor Dan Georg who endorses treatment; 2nd opinion where academic conflict of interest is suspected; bad reaction to Zometa; chemo steroids create mega-munchies – GLP1 helps; if enz is not making issues, don’t switch; BRCA gets Gent to finally see a GU med onc; rash from coming off HT meds; self-advocating shortens time on HT doublet
AnCan thanks the following sponsors for making this recording possible: Novartis, 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: Switching hormone therapy drugs and for how long is the flavor of the day.
Topics Discussed
AnCan’s poster at GU ASCO26 https://ancan.org/ancan-gu-asco26-survivorship-poster/; doing well on HT, but for how much longer; real world evidence (RWE) lawsuit between Bayer and JnJ ARSI drugs; appointment set with GU MO at Fox Chase; confusion over NCI trial eligibility; stable after 24 months of HT – should he change it up?; triplet to doublet – can he switch HT drugs; abi and cost; HCP decisions to switch drugs; best Sibley GU MO for BRCA2; Siemens Quadrant may give better PSMA images at bladder neck; NEWBIE – climbing PSA on recurrence but nothing seen
Rick – do you have a verifiable mail or phone address for Dr. Epstein so I can request a second opinion of a Fox Chase biopsy? I’ve failed on three attempts.
AnCan thanks the following sponsors for making this recording possible: Novartis, 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: Pros & Cons of Estradiol (E2) as primary and complementary ADT… & mustard!
Topics Discussed
Intraductal (ICC-P) AND cribriform complicate treatment decision for younger Gent; more IDC-P & crib man recurs after RP bringing questionable treatment from Kwon; young denovo Mx BRCA2 has surgery then salvage RT and HT; knee surgery results in temporary daro suspension; mustard under the tongue; Dana Farber gives better advice and recommends GUNS RT trial; a great candidate for ‘Playing the Long game’; extensive discussion around the use of estradiol (E2), both as primary ADT and as complementary to LHRH ADT drugs
Jim Marshall, Veteran, Alexandria, VA sent: 8:12 PM
Need to ask your VA Doctor. I doubt if there is a VA policy on this, Jim Marshall
Brian Haack – Eagle, ID sent: 8:20 PM
great discussion on E2. See you next week
Bruce Schrimpf sent: 8:21 PM
AMEN!!!! It is very enjoyable to be on nothing!!!
Jeffrey G sent: 8:27 PM
To anyone: Has there been discussion of becoming castration resistant on E2?
scott b sent: 8:31 PM
thank you… great discussion!
Bruce Schrimpf sent: 8:41 PM
So why does not “medical science” search for the cause and the cure for prostate cancer? We are screwing around with surgery, radiation and hormone therapy that is not a cure for prostate cancer all the while doctors, “medical facilities,” and big pharma that cut, radiate, and pontificate make money on selling what is essentially rubbish.
(Editor’s Note: that’s exactly what pharma/biopharma is seeking, Bruce. To date we can only find drugs that manage and not cure it!)
AnCan thanks the following sponsors for making this recording possible: Novartis, 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: Cribriform complicates treatment decision; and we discuss NCI trial
Topics Discussed
Over-70 KP ‘Couple’ insisted on PSA against protocol and found 4+4 cancer – cribriform complicates Tx decision; recently Dx denovo Mx ‘Couple’ seeking their way; recurrence after 7 years may set up well for NCI trial; high Decipher and cribriform may point to doublet; NCI Playing the Long Game discussed – Dr. Paul rightly finds it antithetical; Natera trial result reports zero level ctDNA; leg pain after starting doublet HT; push the IHT 3 more months with diligent AS; estradiol vets defer conversation to next week; side effects of radiation treatment
Is Gallium – 68 the more sensitive recommended radioactive tracer to use for a PSMA-PET Scan? Just wondering if seeking the best tracer produces better results.
AnCan thanks the following sponsors for making this recording possible: Novartis, 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: Unrelated Newbies from either Coast have almost identical issues.
Topics Discussed
Our two Newbies are ‘twins’ – both denovo Mx on the cusp between high and low volume mets, and both with less experienced GU med oncs; 4x chemo down doing well with a full head of hair!; finding an exercise program; contacting NCI; Orgovyx trumps a 6-mo. depot shot; early radiation cystitis; finding Dr. E; with heart history, Orgovyx or Lupron?; discussing NCI trial & adaptive therapy
Chat
AnCan – Rick sent: 5:55 PM
Technical assistance 877 582 7011
AnCan – Rick sent: 5:56 PM
Playing the Long Game https://www.youtube.com/watch?v=v4jzyAeOtNI
Great Meeting again gang! I’m out – time to walk the dog.
michael perillo sent: 7:21 PM
Hi all, need to leave the meeting. Obviously have quite a bit of work to do re possible change to orggovyx, possible use of radiation, chemo or other triplet approach, possible somatic testing as well as second opinion. Will follw up on future meetings. Thanks Michael
AnCan–John A sent: 7:21 PM
Ok Michael, welcome
Eric James; Tyler TX sent: 7:25 PM
The weight you use is relative to your strength. Weight is usually selected based on how many reps you are to do.
Steve Schuler (Go Seahawks!) sent: 7:31 PM
Did you have doubling time data before going on the ADT?
The reason I ask is that there will be a lag after going off ADT before the DT data will be reliable
Eric James; Tyler TX sent: 7:33 PM
The NCI doc presentation has some overlap with Adaptive Therapy
Steve Schuler (Go Seahawks!) sent: 7:38 PM
Orgovyx will restore your T faster once you get off it
RJ Smith (Seattle) sent: 7:48 PM
ChatGPT, etc.) is not a GU Med Onc. Not even a urologist or MD of any kind.
Steve Schuler (Go Seahawks!) sent: 7:56 PM
gotta drop, love to hear more discussion of the NCI YT video at some point. If that happens after I drop, I’ll view the recording of this session later
Richard B, Silver Spring, MD sent: 8:02 PM
I need to step away due to an early start tomorrow morning. Nothing new to report but more assessments this week. So possible report next week. ‘Appreciate all the conversations. Good night.
dan-s alexandria sent: 8:03 PM
gotta go, gents…. good conversations.
Bruce Schrimpf sent: 8:11 PM
As always it was very informative. Thanks for being “there” for those of us struggling through!
Hi-Risk/Recurrent/Advanced PrCa Video Chat, 5/4/26
Survey Opportunity
$200 for a 60min interview. Must be mHSPC or mCRPC; 40-75+/-; NOT have used Talzenna, Xtandi or Orgovyx. Reach out to Jason at 773 383 9090 jturner@flinceresearch.com. 15 needed. Indicate you are via AnCan and let us know if accepted (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: Mutation issues prevail tonight… but also 1.4 PSA on mono daro raises questions.
Topics Discussed
Does PTEN change HT duration?; low/intermediate Gent sneaks in; gynecomastia prevention; is a 1.4 PSA on mono daro good or bad?; 2nd opinion for another PTEN Gent; BRCA Gent finds new lead GU MO; HIFU for recurrence within prostate; bad reaction to first chemo; PSA rises 4x in 3 months; younger Newbie follows triplet against TP53 and PTEN
Chat
AnCan – Rick sent: 4:53 PM
Flince survey…. NO Talzenna, Xtandi or Orgovyx JTurner@flinceresearch.com
40-75 +/- metastatic
AnCan–John A sent: 5:42 PM
germline (inherited) gene test
AnCan–John A sent: 5:44 PM
Dr Epstein: advanceduropathology.com (516)280-7930
Don Rogers sent: 6:06 PM
anastrozole 1 mg twice a week
Len Sierra sent: 6:24 PM
The only study I’m aware of was the EMBARK trial with 3 arms: ADT alone, Enzalutamide alone, and combo of enzalutamide and ADT. Read about that trial.
Richard B, Silver Spring, MD sent: 6:31 PM
I need to step away to take a phone call. I appreciate the efforts of the AnCan team for their efforts to this evening’s discussion.
AnCan–John A sent: 6:33 PM
cabazitaxel Jevtana
AnCan Bill sent: 6:34 PM
Frank is still on. Just not in front of his camera right now.
Bruce Schrimpf sent: 6:59 PM
Thanks guys! As always good!
Jim Marshall, Vet Support Grp. Moderator sent: 7:03 PM
Another Trial for PTEN for mCRPC is being run by the VA and GW Hospital called the Carpet Trial. Jim M
“Thomas” Matica sent: 7:03 PM
Good night, gents. Very good meeting and many thanks to our great moderators
AnCan thanks the following sponsors for making this recording possible: Novartis, 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: Two men recur from low levels, one younger, while a much younger man is denovo metastatic.
Topics Discussed
Fit 87 yr old seeks more treatment ideas; younger man recurs post-LDR brachy for 3+4; – cud be a NCI candidate; 3+3 comes back after 5 yrs as 4+5; PSA stays high but stable after 9 months of doublet – change docs!; Clomid causing heart issues; Long Game candidate gives update; Axumin goes AWOL; another very young Newbie with multiple 5+5 cores needs a GU MO; Gent switches care at MSKCC
Good luck John B. I must ring off for tonight, best wishes to one and all! — Alfredo
Morgan Brooke sent: 4:36 PM
Okay. I thought I was here in the first 10 minutes. I’ll be sure to join earlier next week. Thank you
Jim Marshall, Vet Support Grp. Moderator sent: 4:36 PM
Jack. – welcome to the CLUB!!!!!
Jeff Marchi – San Francisco sent: 4:38 PM
morgan too many new people today
Morgan Brooke sent: 4:38 PM
Understood
Jeff Marchi – San Francisco sent: 4:40 PM
get here 10 minutes before the meeting
Danny sent: 4:50 PM
you looking for folks to speak?
Danny sent: 4:53 PM
Jun 2022 PSA=4 (no actions taken) Nov 2025 PSA=13 Nov 2025 MRI PiRADs=5 Nov 2025 Biopsy Gleason 10 (5+5) Nov 2025 PSMA PET Local pelvic mets Nov 2025 No Genetic germline or somatic adaptations to treat Dec 2025 Started ADT (Nubeqa 1200mg + Orgovyx 120mg) daily Jan 2026 Blood Panel (PSA=0.45 T=11)
Urology: R. Jeffrey Karnes, MD Onc: Elisabeth Heath, MD RadOnc: Anne Rajkumar, MD
