1. < Prostate Cancer

Gleason 9 SO wants me to stop ADT @6 Mos for look see

Posted by chippydoo @chippydoo, Apr 18 9:57am

My SO wants to stop ADT after 6 months and wait 2 months then test to see if PSA rises? Does this make sense? Just finished 3 mos of Lupron and switching to Orgovyx for a total 6-month ADT and had my 3 month visit with SO Thursday.
T is 3, PSA is below 0.014 considered UD.
Gl-9 Gr-5 Crib-3,4,5 RP 2.5 years ago, BCR 2.22 at 2 years followed with Neg PSMA Pet 4 mos. ago and 25 EBRT salvage due to
Suspected (no scan light ups) Prostate bed "Klingons". No known spread to lymph system.
I am a retired tradesman not a scientist.
I will be getting a second opinion next week from a local NCI Comprehensive Cancer Center.
Does anyone have experience with this category and treatment? Does it make sense based on your personal experience and treatment regimen?
Thanks for your thought's fellow warriors.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

johnernest | @johnernest | Apr 20 1:54pm
In reply to @jeffmarc "My cancer was detected 15 years ago. Four years ago, I found out I also have..." + (show)
@jeffmarc

My cancer was detected 15 years ago. Four years ago, I found out I also have BRCA2, Which is why I got prostate cancer younger than my brother or father. I was on ADT for eight years. It’s reached the point now where i stopped ADT because after the long time on it, it will almost definitely not cause my testosterone to rise again, since I am 77 and was on it for so long.

Many years ago I got my six month Lupron shot Late by about two weeks and my PSA went from .1 to .6 in 2 weeks. After getting the next shot, I stayed undetectable for two years. Then I became Castrate resistant and started on Zytiga. 2 1/2 years after being on Zytiga I tried dropping from Four pills to three to see if it would help reduce the brain fog. In 18 days, my PSA went from .2 to 1 after dropping to three pills. BRCA2 wasn’t going to let me give up on anything. I also had my third Afib event from Zytiga and had to spend four days in the hospital with a real high pulse.

I then had the metastasis zapped on my spine (yes Stage 4) and switched to Darolutamide. I’ve now gone 17 months with undetectable PSA. I am a Gleason 7 4+3, So my cancer is probably less aggressive than yours.

Hopefully your decision to stay on ADT will keep your cancer in remission. Victor, who runs the CSC online Prostate cancer meetings every two weeks also has BRCA2. He went on a holiday and his metastasis now light up a PSMA Pet scan with many tumors. Another situation, where a BRCA2 Patient found out that stopping treatment can lead to a shorter lifespan.

Wish you the best.

I know if I were to stop Darolutamide my PSA Would start to rise immediately.

Just to let you know about someone else with their trials and tribulations with BRCA2.

I attend weekly advanced prostate cancer 2 hour online webinars with Ancan.org. They’re going to start having 2 bimonthly meetings with people who have BRCA, So we can discuss our situations. If you are interested, you should sign up with ancan.org.

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Thank you for the information and your experience. I’m 72, my brother died from PC at 62, just 6 months after diagnosis (2006). My sister died from pancreatic cancer at 74, and my other sister is now fighting breast cancer; BRCA 2 had not been kind to my family.
I will signup for the bimonthly meetings you mentioned.
Thanks again and take care.

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ededed | @ededed | Apr 20 1:55pm

My Gleason was 8. I had 42 sessions of IMRT four years ago. I quit ADT after one year due to joint pain. My urologist wanted me to stay on it for 1 1/2 to 3 years. Since before I quit ADT, I have been taking Turkey Tail tea daily. Research has shown that the polysaccharides in Turkey Tail tea can kill prostate cancer stem cells which reduces the chance of metastasis. My recent PSA is 0.07. We all need to own and take personal responsibility for our own treatment of prostate cancer. I wish you the best. https://pubmed.ncbi.nlm.nih.gov/37368660/

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northoftheborder | @northoftheborder | Apr 20 2:03pm
In reply to @rotate "There is another test that apparently is good at predicting metastases - DECIPHER. My treatment plan..." + (show)
@rotate

There is another test that apparently is good at predicting metastases - DECIPHER. My treatment plan based on low risk DECIPHER score, tumor stage, and G9, is only radiation, no ADT. So I'm placing a big bet on that analysis.

Scary, but I've researched it and, well, we'll see. It's part of a clinical trial, in this. case high risk cancer (G9), low risk on all other markers (PSA, DECIPHER, tumor stage). I have friends on ADT or who have had it, understand the negatives of ADT and the one positive: it may save your life.

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With Gleason 9, I suspect they'd treat it as aggressive regardless of Decipher score. I *think* Decipher is most useful for borderline results like Gleason 7, but I'm just a layperson.

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rotate | @rotate | Apr 20 2:57pm

Hi,
The clinical trial schema(below) uses a set of risk indicators. One risk => low risk group (radiation only), two or more risks => moderate risk group (radiation + ADT). DECIPHER score >.85 is counted as high risk - mine was .32. That put me in the low risk group of the high risk prostate cancer ADT study.

I have been told that DECIPHER has been shown to be very accurate, and is now part of their standard risk analysis.

Group I: Low Risk
Decipher Genetic Score < 0.85 and
1 High Risk Factor (Gleason 8-10, T3, PSA >20)
Dose: 35Gy/ 5 fx (RBE), 60Gy/ 20 fx (RBE), 70 Gy/28 fx (RBE)
No Androgen suppression (AS).

But I would not be surprised if different groups or oncologists gave it different weighting in their analysis.

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bluegill | @bluegill | Apr 20 3:27pm

I'm rethinking my original post in this thread (I think it was the second post). I'm not upset that my urologist took me off ADT for awhile. What bothers me is that he waited until my PSA had gone way up before putting me back on ADT, but even worse, I asked him on several occasions if I should be seeing an oncologist, and he strongly discouraged that. This was before I had Medicare, so trying to make an appointment with another doctor without a referral was difficult.

I finally talked him into letting me have a PSMA, which cost me $3,000 out of pocket.

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chippydoo | @chippydoo | Apr 20 4:23pm

Sounds like a private urology practice like I am leaving. They claim to be the largest in town, but nowhere do I hear them saying they are the best. You need to be lucky or know someone in there that is bonified good. I am still on private insurance and can choose providers. Medicare is just around the corner.
I hope all works out for you.

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chippydoo | @chippydoo | Apr 21 9:13pm
In reply to @johnernest "I am stage 4 and also have the BRCA 2 gene mutation. On ADT for 7..." + (show)
@johnernest

I am stage 4 and also have the BRCA 2 gene mutation. On ADT for 7 months now ( Trelstar and Darolutamide). Current PSA is less than 0.10, my tumor and metastatic areas have greatly diminished, no more symptoms at this point. I asked my doc about an ADT holiday and he said no and instead wants to keep me on ADT for at least 3 more years. He told be highly mutated cancers like mine, (G9) are very dangerous and will eventually mutate again, stopping ADT will only open a window to let it mutate into something worse and less treatable. I am managing ADT side effects well, so I plan to stay on ADT as long as it continues working.

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I am stopping my Dr. and not planning on stopping ADT for a year or two. Wondering if nmHSPC is a fancy way of saying pre-mHRPC purveying false hope.

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