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

Phil,
My doctor never discussed 18 months of ADT treatment. It was always 6 months. This week he mentioned going off after 6 and waiting 2 months and testing PSA to see if it is still unmeasurable. I am not on board with this and in the process of switching to a Urology Oncologist at our local Comprehensive Cancer Center regional teaching hospital with one of the senior Professor/clinicians this coming week.
This group led me to good resources and will be changing doctors as a result. I am in it to win it as long as I can and willing to change regiments if beneficial.
Blood work by pcp prior to starting ADT for baseline was great. Just had my 3 month bloodwork done. My hemogloben dropped from 15.7 to 12.7 in 3 months while on ADT. From normal to low. Other blood related stuff also dropped.
Lipids in July.
I stated this process in a panic and allowed myself to be led around by doctors. My head popped out about 3 months ago and became a better advocate and more assertive. No more passing me around like the hat.
I am so grateful for you and the other warriors that have shared their experience, strength and hope. I look at the whole thing differently now.
Regards,
Chip

I'm not saying get off prematurely but eventually you need to take a holiday to determine what you next steps will be. Eventually the ADT will quit working mean while all the time your on it the cancer has simply slowed down not died. At some point you need to determine if it's gone or where it's moving to.

Did you start ADT soon after surgery even PSA undetectable?

Well of course you want to stop it at some point - it’s not even good to stay on it for too long; but WHAT is the point at which you stop?
I’m only going from my own experience, Gleason 4+3 unfavorable and recurrence 5 yrs after surgery. I was prescribed 6 months of ADT - which was plenty, believe me…
But for a Gleason 9 (with cribriform?) which came back after 2.5 yrs, you are dealing with a more aggressive cancer. I’ll go one step even further. I would ask a medical oncologist if there is an additional drug I should be on to really wipe this out now.
I agree that the only way to know definitively is to go off ADT and see what happens, but what’s the next step if it starts going up? Chemo? Triplet Therapy?
Honestly, I am not happy thinking about this sh** coming back again for a third time.
Phil

No. My post RP numbers were 0.03 and 0.04 at 12 months. Then 0.08 and then .22 at 2 years. At that point I started ADT and 3 weeks later salvage radiation. Currently my psa is undetectable and T is 3.

I agree on all points and that is the reason that I am going for a second opinion from an oncologist that specializes in Prostate cancer. Time to move on from a surgeon that has "an interest" in oncology before it is too late. 3.5 months on ADT and can say it isn't great but have experienced worse treatments.

True, but the second-generation ARSIs (the "-lutamides") can massively extend the period of time that ADT keeps working for many patients, so a lot of the old common knowledge is out the window now. They're expensive, though, so it might mean an insurance fight in the U.S. for non-metastatic high-risk PCa. 😕

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.

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.

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.