What treatment options did you choose for very-high-risk prostate cancer?

Navigating a very-high-risk prostate cancer diagnosis brings up many important questions about treatment paths, and reaching out to connect with others who've faced similar decisions shows great wisdom. Each treatment option - whether radiation with hormone therapy, surgery, or active surveillance - comes with unique considerations that community members here understand firsthand. The experiences shared by others who've walked this path can provide valuable insights about factors to consider when weighing options alongside medical guidance, and many find it helpful to hear about both the practical aspects of different treatments and what questions proved most important to discuss with their care teams.

I have high grade, high risk and very aggressive cancer with gleason score 8. Had 6 weeks radiation and will be on hormone pills for 3 years. Surgery was not an option due to my age. I'm 79 and doing well so far. Good luck with your decision.

In 2018, I was diagnosed with Stage IV (T3,N1,M0) prostate cancer. Gleason grade 4+5 and PSA 11.5 combined with node positive and 95% of cores positive for cancer meant aggressive cancer and aggressive treatment. 3 years ADT concurrent with 2 years Zytiga and 45 days of intensity modulated radiation followed. Treatment options were not offered or explored. 71/2 years on my PSA is <.1, or undetectable, and I’m feeling well.

In 2023 diagnosed with very high risk Prostate cancer (Gleason 4+5 PSA at diagnosis 3.2 thought to be a non PSA producing tumor three pelvic lymph nodes positive) Eligard plus aberaterone for 2 years ( during which testosterone undetectable) 28 sessions of proton radiation. Been one year since stopping ADT testosterone 188 still very low PSA 0.11 surgery was not an option for me due to location of nodes. Outside of residual ADT side effects life is still good. Best of luck

I was diagnosed with prostate cancer in June 2025. Gleason 9 in one sample and Gleason 7 in the other 11. PET scan showed slight involvement of one seminal vesicle. Not a candidate for surgery due to seminal vesicle involvement. I had 25 sessions of external beam radiation therapy. I was also started on ADT., Orgovyx and Nubeqa. I have experienced some bowel issues from radiation and fatigue and weakness from the ADT. My last PSA was .06. Side effects are a challenge but manageable. Best of luck in your choice.

I suggest you look into the results of recent trials to get the most recent findings on new treatments. Specifically the STAMPEDE trials and other informative articles published on the Outcomes4me website. The new strategies aim to suppress tumor growth more effectively during the hormone sensitive phase of disease, when prostate cancer remains most responsive to therapy. Hit it hard at the start instead of letting it get used to the ADT. It sounds like you're on the right track, at least very similar to my treatment. I was diagnosed in March 2024, PSA 15, Gleason 5+4, spread to seminal tube and nerve bundle on left side plus 2 lymph nodes, one near my left kidney. 26 sessions of radiation plus Lupron (27 months so far) and a receptor blocker for about 3 months. I had bad post radiation symptoms so didn't tolerate the receptor blocker very well. Wish I would have stayed on it longer now, they say it greatly improves outcomes. PSA has been undetectable since 3 months after radiation. That's the good. The bad is I'm 62 and no longer have any sex drive, and have erectile dysfunction. Also significant fatigue and gained 20 pounds. I walk every day and exercise 5 days a week. Not sure how long I'll be on Lupron. It takes its toll but is stopping the cancer for now. Good luck with your journey. This website is helpful for me, hope it helps you as well.

I, too, would direct you to the Stampede trial. My oncologist followed the protocol noted in that trial. With a Gleason 9, 95% of cores positive for cancer, and node positive, it seems that he made a good choice. At 71/2 years, my PSA is <.1, and I’m feeling well. Despite all the usual side effects from treatment, even if given a choice, knowing what I know now, I would not change anything other than the advice of a primary, 7 years before my cancer diagnosis, to forego screening. He was following USPSTF guidelines, about which I was ignorant, and I had placed my trust in a “learned” doctor.