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.
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.