← Return to 44yr PSA180 Gleason9 non-metastatic. Surgery or Treatment?
Discussion44yr PSA180 Gleason9 non-metastatic. Surgery or Treatment?
Prostate Cancer | Last Active: Sep 27 11:03am | Replies (112)Comment receiving replies
Replies to "Bill, also can you tell me more about the ADT you took it for two years?..."
Hi Steven,
I received an injection of lupron in the hip (no pain during or after the injection) every three months for 2 years. In addition, I took a daily oral dose of abiraterone (1000mg) and prednisone (5mg). My PSA dropped to undetectable 3 within months of starting ADT and has remained there ever since (with the exception of a single test that was taken shortly after a 20+ mile mountain bile ride which registered .04). I had proton therapy in conjunction with the ADT. While I experienced most of the side effects attributable to the lack of testosterone, I was able to continue my daily routines with very little impact. On days with prolonged physical exertion, I would tire more easily and scheduled an afternoon nap in when possible. My testosterone levels returned to pre-treatment levels about a year after the end of ADT. Throughout treatment, I followed a largely plant based diet which included 1.2g/kg of body weight of plant based protien foods (not powders or other forms of supplements). I took the doctor recommended calcium and vitamin D supplements and included both tofu and soy milk along with 10 cups of fruits. veggies, nuts, seeds and whole grains each day. I did 1 hour of cardio and resistance training a minimum of 3 days per week from home with dumbells. I signed up for a live virtual class which created the expectation that I would be there every day (they would text me if I was a no-show). The class got me to exercise even on days when I just didn't want to do it. I was not on bone strengtheners and my DEXA scan results showed stable or increasing bone density compared with baseline throughout treatment.
NCCN Very High Risk Gleason 9 prostate cancer is very agressive with high percentages both cancer specific mortality and all cause mortality. While I felt nervous about the treatments that I would need, I also knew that if I followed the recommended treatments in the NCCN guidelines that are written, updated quarterly and followed by the majority oncologists at the best cancer centers in the country, I would be neither over treated or under treated and have the best chance of a favorable outcome and long healthy life. This belief was substantiated by the Stampede Trial data from 2018 and 2021. My doctors, all at The UW/Fred Hutchinson Medical Center in Seattle, agreed that no deviation from the NCCN guidelines would be smart or appropriate given my very high risk PCa classification. With my uPSA remaining undetectable, having had little to no disruption to my life (other than some initial significant fear) and no remaining side effects from treatment, I am very happy with my treatment choices as well as the care I received at UW. If I had it to do all over again (PLEASE NO!!), I wouldn't do anyththing different.
The following link is to a very digestable article about the results of the Stampede Trial and the benefit of two years of ADT+abiraterone to radio therapy for high risk disease. By virtue of being Gleason 9 with cribriform, I was considered to be in the NCCN category of Very High Risk and I believe you are too, but ask your doctor.
https://dailynews.ascopubs.org/do/next-generation-androgen-signaling-inhibitors-do-results-stampede-trial-inform-therapy#:~:text=*%20Results%20from%20the%20STAMPEDE%20trial%20of,era%20of%20PSMA%2DPET%20imaging%20in%20high%2Drisk%20disease.
I wish you all the best with your treatment planning! Please keep posting so that we may all learn from your experience and walk beside you as your journey unfolds.
Bill
I’ve been on it for nine years.. I stopped for six months last year and my testosterone started rising pretty quickly and I’m 77.
I’m not sure where you read It’s hard for testosterone to return, but I have not seen that Proven for the majority of people. Yes, it may take six months to a year for it to return if you have had Lupron for a long time, People that have taken Orgovyx have had it return in months rather than having a long-term wait. I have heard from a few people that have had it not return it all or have a long time before It did return, but that is not the norm.