Starting Proton Treatments for Prostate Cancer: Any experiences?

@imbimbo Yes. That should always be done to protect from long-term rectal issues. Makes something like that very low probability. No matter what they say, always do it.

@westernflyer I also had proton radiation in 2010. Tsukuba university hospital in Tokyo. It was also 39 treatments and I happen to know the same machine as Loma Linda. It was not covered by insurance. Total cost was about $25,000.
I also did 1 1/2 years of ADT. For the last 15 years, my PSA has remained around .2. I recently had something show up on my spine. Which was possibly recurring cancer but a newer PET scan machine says it is not active. Does not seem to be cancerous. With my PSA being so low for 15 years all of the AI Chatbots and my Dr concur the chance of my cancer recurring is about 1%. And I was initially a Gleason seven and eight and T3 ANOMO.

@stevesien What I did not mention is my PSA began to rise about 4 years ago. In early 2025, I had MRI and PET scan and nothing conclusive. I just had a conversation with the urologist and we both agreed active surveillance was the best option along with PSA tests every 4 to 6 months. With 15 years of information gathering and review, I am more informed than most. It seems every man is different in some way based on PSA, MRI, PET scan and Gleason score. So, each to his own. Remember, aging has an impact on PSA scores regardless. Also, BPH or other can impact PSA. Thanks for stopping in...

I had 34 fractions of proton in 2022, spacer inserted plus gold markers. PSMA/PET March of 2025, no light up of tracer in prostate. Prior to proton treatment, biopsy showed 3 cores out of 12 cancerous, G6, G7, G8. Currently prostate is considered “COLD”, all cancer destroyed in PROSTATE. For me it was highly effective.

I’m 49; diagnosed 4 months ago. PSA at diagnosis was 118 w/ Gleason 9 - 8/12 biopsy cores positive. PSMA PET showed regional spread to pelvic lymph nodes and seminal lining - no distant sites seen in scan. I’ve spent the past few months making the rounds at different Centers of Excellence to learn as much as I can to ID best path forward. Consulted with Mayo, Memorial Sloan Kettering, MD Anderson. Landed on Orgovyx+Abiraterone (taken with Prednisone). Two of the centers also recommended proton therapy over standard (photon) due to proximity of lymph nodes to bowel. I’m going through the insurance process now to get proton therapy approved. I have a good commercial plan, however, the first request was denied. Second request involved a peer-to-peer and was also denied. My care team is presently working with a third party (Apollo) who specializes in proton medical appeals. They submitted a comparison plan last week and I’m waiting on a decision. If it gets denied again, I have one more level of appeal, to an outside board. I’m hopeful the treatment will be covered, but concerned it will not. Any advice? Have those of you who have undergone proton therapy been satisfied with the results? Did anyone achieve “remission?”