Hi-Risk/Recurrent/Advanced PrCa Video Chat, Sep 7, 2026
Are you in DelMarVa?? Reserve Wednesday night, Sep 16 for an AnCan get-together. We’ll meet for a ‘dutch’ dinner in the Chevy Chase area – location TBD. If you have not received an email invitation and would like to attend, please drop a note to boykin@ancan.org. Partners/spouses welcome!
And if you’re in Los Angeles or going to PCRI Sep 18-20, please reach out to Bill Franklin as we may hold an AnCan meetup.
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.
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: Severe radiation cystitis interferes with treatment plans
Topics Discussed
Was this Newbie really a 5+4 at Dx in 2010?; RT done – now to HT and what next?; crippling RT cystitis changes PrCa treatment plans; could Pluvicto be an option for mHSPC Gent; extensive initial RT preferred; why can’t RO prescribe HT?; move forward with salvage RT and adjust LHRH; muscle cramps; move to CoH, Duarte makes difference; does Pluvicto need prior hydration infusion?; surprise bone Bx – somatic sequencing may take time; RT finished – what to expect during doublet HT?; is screen for blood clot or variant PrCa?
Chat
Jeff Marchi – San Francisco sent: 5:17 PM
877-582-7011 tech support
AnCan–John A sent: 5:18 PM
thanks Jeff and Jim. try that Gary
Gary P sent: 5:36 PM
The second one sent by you. Just got off phone. Thanks very much.
Damon I thought you said HDR rather than low dose brachy, but I might have misheard?
Gary Martin sent: 7:39 PM
I’ve heard the FDG PET scans and the biomarkers including LDH, Chromogranin A, NSE, and CEA are often tracked where PSA-discordant progression may be suspected.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Sep 1, 2026
Are you in DelMarVa?? Reserve Wednesday night, Sep 16 for an AnCan get-together. We’ll meet for a ‘dutch’ dinner in the Chevy Chase area – location TBD. If you have not received an email invitation and would like to attend, please drop a note to boykin@ancan.org. Partners/spouses welcome!
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 dr.john@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: 1) when your pituitary goes dormant 2) is debulking the primary right?
Topics Discussed
Stable disease but treatment leads to one atrophied kidney; is a GU med onc needed at this juncture?; pituitary never recovered post prednisone/abi – what next?; pros and cons of RT debulking for higher volume denovo Mx Gents; Tony Fig’s shoulder surgery; RT cystitis causes hospitalization and deferral of clinical trial; is Testosterone replacement appropriate?; heart issues defer advocating for a PSMA update
Chat
Pierre D., Olean NY sent: 3:11 PM
$50 \hr
Alfredo in Wimberley, TXsent: 3:55 PM
gadolinium
jeff wood sent: 4:04 PM
What are the repercussions of debulking?
RJ Smith (Seattle) sent: 4:07 PM
Standard side-effects and long-term risks of side-effects from the radiation.
Len Sierra sent: 4:20 PM
The Bardo Thodol – Tibetan Book of the Dead — kudos to Dr. John!
Active Surveillance Prostate Cancer Video Chat, August 26th, 2026
AnCan is grateful to the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics, Telix, and Foundation Medicine.
Active Surveillance (AS) for low-risk prostate cancer involves unique challenges compared to other treatments. This online support group is designed for men and their caregivers who are currently on or considering AS. We hold four meetings monthly, recording only the second and fourth sessions. Our discussions cover a wide range of topics, including anxiety management, biopsy experiences, and the decision-making process around continuing or discontinuing AS. Newcomers are given priority to share their experiences, so we encourage you to join us.
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.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 17, 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: 1) Why are Axillary lymph nodes not considered distant? 2) Why does MSKCC prefer bone Bx?
Topics Discussed
Another low risk Gent graduates to this Group; Pluvicto cleared all but foamy gland cancer; new Sony cooling gismo; urinary blockage from RT inflammation – self catheter; surgical blood clot doesn’t rule out abi+pred but doublet not indicated; HT causes hot flashes… urgency more likely tumor – RT to start; can E2 help with hot flashes? – distracts from key Q about length of HT; moving from Lupron & abi+pred to Orgovyx+daro… is monotherapy an option?; is attending PCRI worthwhile?; Axumin shows a result – local or distant and what next?; RO at Hutch selected and VA sets up genomic tests; E2 access again – attend UCSF session; MSKCC moves off the dime to set up new doublet and Pluvicto…. but why a bone Bx?
lots of repeat information, but it does keep you up to date on any new science. I am very glad to hear you are thriving in your new home.
Gary Martin sent: 6:00 PM
Different catheter brands and diameter vary in ease-of-use and pain/irritation. I find the the Coloplast Speedicath (no-touch, hydrophillic) of smaller diameter 12 easiest.
Bill Lawler sent: 6:19 PM
Transdermal Estradiol
Gary Martinvsent: 6:32 PM
The hot flashes, I hear, interfere with sleep, which can cause the cognitive symptoms.
Bob Y — Los Angelesvsent: 6:40 PM
I need to leave early. My update was just some small detail. Thanks to all. My leg pain is indeed due to disc bulge hitting nerves and not the two ADT drugs.
Gary Martinvsent: 6:42 PM
Last year the PCRI conference was recorded and available online.
Pierre D., Olean, NYvsent: 6:54 PM
Axillary nodes should be amenable to biopsy and somatic testing
AnCan–John Avsent: 6:58 PM
“This send there is slightly prominent left axillary node with slightly increased radiotracer activity…measuring approximately 13 x 11 mm with SUV max of 5.1”
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 11, 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: Toss up between the silver lining in HT treatment, and slow T recovery.
Topics Discussed
Originally AS Newbie graduates to T3 maybe T4 treatment; mono daro working but dental issues arise; Alaska doc needs a solid GU QB; pros and cons of tolerating hormone therapy; post-RP PSA still going down; … and post RT/HT PSA declining for our Poet; whole body MRI vs PSMA scans for monitoring; still getting the runaround for GU MO at Sibley – but RO set; follow up PSMA now negative for younger Gent; leg pain and fatigue likely not from HT drugs; MRI on T10 prior to spot RT; heavy brain fog suggests switching ARSI but Pluvicto follows; T recovery slow but after 7 months – don’t panic
Chat
Steve Schuler (Seattle) sent: 3:30 PM
My Rad Onc at Fred Hutch was Jonathan Chen, and I felt like he provided competent care. My oncologist was Evan Yu; he’s been bumped up, and now it is Rajitha Sunkara. I like her.
Jim Ekrut, Ft. Worth TX sent: 3:33 PM
I recommend Biologics by McKesson or Onco360 as specialty pharmacies with access to financial aid. I received a grant from PAN through Biologics that covered all costs for one year of Orgovyx.
Steve L sent: 3:36 PM
UW Northwest is the location for Proton Therapy. They may also do other radiation treatment.
Steve Schuler (Seattle) sent: 3:45 PM
I talked to my oncologist (Rajitha Sunkara). and referenced the PATCH study.
Jim Marshall, Vet Sup Grp. Moderator sent: 3:58 PM
CASODEX = Bicalutamide Jim
Jim Ekrut, Ft. Worth TX sent: 4:12 PM
I finished eighteen months of Orgovyx June 19. It did exactly as intended alongside radiation, with my PSA <.01 and testosterone <10 for a full year. My PSA was measured Friday 8/7 , almost seven weeks post-treatment, still <.01 but testosterone has risen to 48. That said, I experienced every side effect listed on the Orgovyx website and more.
Sorry to leave, but I have another meeting commitment. Thanks for the support. All the best!
Jeffrey G sent: 4:21 PM
How old is he?
AnCan–John A sent: 4:21 PM
64
Dave Lied – Pittsburgh sent: 4:23 PM
Thank you all for the informative discussion tonight. Sorry to leave early.
Jim Marshall, Vet Sup Grp. Moderator sent: 5:12 PM
Was on ADT for 5 years, did not budge for 3+ years. Then and now less than 50, Jim
Steve Schuler (Seattle) sent: 5:15 PM
thank you for the feedback, exactly what I wanted!
Barry Blomquist sent: 5:15 PM
Thanks guys good information – next week.
Steve Schuler (Seattle) sent: 5:16 PM
I had been on Zometa when I had teeth removed, and my oral surgeon gave me Pentoxifylline 400mg + vitamin E 450mg for 60 days, which is apparently a protocol that increases blood flow (perfusion ?) and reduces risk of jaw necrosis
Jim Marshall, Vet Sup Grp. Moderator sent: 5:18 PM
When Abi caused Liver issues, I got dropped from 4 to 3 pills a day and good for the next 5years.
Steve Schuler (Seattle) sent: 5:19 PM
EMBR worked for me moderately well, but I dropped it when I started E2, which was a great help to me
