Starting Proton Treatments for Prostate Cancer: Any experiences?

@4rs Yes I have complete remission, 15 years now. My PSA has remained around .2
Had proton and 1.5 years of adt. I was 54 years old. I was T3ANoMo gleason 7 and 8. PSA 9.7
Mine had only got to the cap of the prostate. Proton was better I believe as there are less side effects. And was very effective. Though I was told the 6 months ADT prior to proton just about removed the tumors by itself. There is so much treatment these days, I think you'll do well. Good luck.

Wow. That’s a shame to go through all that and have poor results. All I can say is Proton and adt did the job for me. At the time proton was not covered , it is now, So I paid out of pocket , about 25000$ ( I’m in Japan, much more reasonable costs of care). I’m glad I did. Good luck .

@stevesien Thanks for this encouraging post. I am currently on hormone therapy (Orgovyx) and scheduled for early November to start Proton Therapy. I am 71 and been through years of active surveillance but as my PSA began to rise, we began the scans and Biopsy trail. With a Gleason 3+4 last year we made the decision to proceed with TULSA PRO, which at the time seemed to be the best choice for me. It was very disappointing after paying over $30,000 cash and expecting better results. My PSA dropped to 2.50 a couple of months after the procedure but continued to rise to 4.6 at month 10. More scans and another biopsy revealed an increased Gleason 4+5 and the cancer had spread quite a bit during the first year. Obviously TULSA PRO did not work at all for me. I was told that "maybe it was a bad TULSA Pro kit and maybe we should go in and try it again at a discounted rate"! I was told they would call me to come back in and get another MRI so they could take another look. They never called and I really had no further interest. So, my team and I have agreed to the Proton Therapy with hormone treatments and very optimistic that this is the right direction.

@dderiso where did you have TULSA PRO? I am seriously considering it

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?”

@ksellers3 I had mine at The Busch Clinic in Alpharetta, GA. Dr. Busch is a great guy and I believe he did the best he could, but for whatever reason, my cancer is worse a year after the procedure than it was before. He only accepts cash ($35K) and makes you sign a document stating that you would not submit to any insurance company. Maybe that should have been a red flag! They claim they have performed TULSA over 500 times with only 34 that were unsuccessful with mine being the worst! I was definitely sold on the procedure and side effects were minimal afterwards. If were were going to do it again, I would highly recommend the Mayo Clinic who does accept insurance coverage and of course they have a stellar reputation. I have talked with others who had the procedure done in Sarasota, FL and Texas and had great results. I wish you the best and please let me know if you have any further questions.

@stevesien Thanks for this encouraging post. I am currently on hormone therapy (Orgovyx) and scheduled for early November to start Proton Therapy. I am 71 and been through years of active surveillance but as my PSA began to rise, we began the scans and Biopsy trail. With a Gleason 3+4 last year we made the decision to proceed with TULSA PRO, which at the time seemed to be the best choice for me. It was very disappointing after paying over $30,000 cash and expecting better results. My PSA dropped to 2.50 a couple of months after the procedure but continued to rise to 4.6 at month 10. More scans and another biopsy revealed an increased Gleason 4+5 and the cancer had spread quite a bit during the first year. Obviously TULSA PRO did not work at all for me. I was told that "maybe it was a bad TULSA Pro kit and maybe we should go in and try it again at a discounted rate"! I was told they would call me to come back in and get another MRI so they could take another look. They never called and I really had no further interest. So, my team and I have agreed to the Proton Therapy with hormone treatments and very optimistic that this is the right direction.