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

This is such an important decision, and it's completely natural to want to learn from others who have walked this path. The treatment landscape for very-high-risk prostate cancer has evolved significantly, and hearing real experiences from community members can provide valuable insights alongside medical guidance. Many people find it helpful to connect with others who have navigated similar choices about radiation approaches, surgical options, or active surveillance strategies. The community here often shares thoughtful perspectives about decision-making factors they considered and lessons learned throughout their treatment journey.

My prostate cancer was Gleason 9 (5+4). The thing about aggressive cancer is the chance to metastasize. I decide to have a radical prostatectomy and the cancer had spread to the nerves on both sides. I chose surgery because I could have salvage radiation if the cancer came back. I have a friend who also had Gleason 9 cancer and chose radiation. His returned and then he had to do cryotherapy because surgery was no longer an option. It destroyed his urethra so he is using a catheter for the rest of his life. I was undetectable for 9 months and then it reappeared. So I had 40 radiation treatments along with ADT for 6 months. It was undetectable for about 9 months again. This time it showed up on one of my vertebrae. I just had 5 radiation treatments and now I’m on Abiraterone and Prednisone. I am now undetectable. My experience is that, because of the aggressive type of cancer, even though you get to where you are not detectable there is always the chance a few cells could be floating around waiting to attach itself. I chose the treatment I did to give me the best treatment options going forward. I hope this helps. God bless!!

I have high risk, high grade aggressive prostate cancer. Had 6 weeks of radiation coupled with orgovyz, Abiraterone, and Prednisone. PSA down to <.01. It's been less than a year. So far so good. I'm 79 and surgery was not an option. Good luck.

I was also just diagnosed with aggressive prostate cancer on both sides with a Gleason 8 on the left side and Gleason 9 on the right. I get my PSMA PET scan done next week and I'm looking forward to it because I need to know if it's spread yet or not. If it's still contained in the prostat, then I'm going to do something that most people think is stupid, but I'm going to try and make my body heal itself because I'm not interested in any of the disgusting options "modern medicine" has offer. Maybe I am stupid to think my body can heal itself from cancer, but the only side effect is being healthier and that sounds a lot better than being cut open, burned with radiation or chemicals or depriving my body of ALL its testosterone (the thing that makes a man, a man!) with hormone therapy. And, if it has spread, the ONLY medical option I'll consider is immunotherapy, because without admitting it, they're admitting there's a way for our immune system to cure us of cancer! I'm sure I'll get some for this post but I really don't care if anyone likes my choices and I'm sorry if you suffered or are still suffering from your choice because I don't think it was necessary, you were not well informed, and lied to, just like the rest of us. I just choose not to take anyone's word for anything, I do my own research and that has led me to believe I don't have to be mutilated to have a good chance of surviving this B.S. disease! Good luck and best wishes to you all, we can win!