What are the side effects of Proton Therapy for Prostate Cancer?

@billybwbf2
Best of luck Billy, hope your treatment goes well .

@mauiboy89 thank you!

@billybwbf2
Was your doctor recommending surgery? Your age, biopsies, Gleason Score, Decipher, PSMA would all be the guidance needed to help you decide.

Regarding proton radiation. It is the most controlled radiation therapy. Any radiation to prostate for cancer treatment is going to affect prostate. However surgery is major and with that comes with a whole different complications and side affects.

I did not have BPH when I had my 30 rounds of proton radiation. I had the Space/Oar and markers done.

Those on MCC that had BPH and then had radiation would be better to provide information on whether they had heard if having BPH prohibited having radiation.

@westernflyer Great info and perspective. When I was diagnosed in 2011 I did heavy treatment research. Loma Linda at that time was one of perhaps 3-4 places in USA that did proton. I would have had to relocate from 2000 miles away, but their treatment and support appeared to be second to none. They treated the whole man. I was able to do Active Surveillance for 15 years and let technology improve, so never made it to Loma Linda. I think at this point if still using the same equipment, it would be pretty dated. You did 40-50 sessions then? There is good reason they took so many sessions. Spreading out the Burn, so to speak. I remember talking to one man that was treated there. He said he never felt anything at any time. My 5 session, I felt it badly

I think you are correct on reasons for shorter more intense treatments. Proton treatment is VERY costly, and dropping sessions from 40 to 5 has to lower costs. With Medicare involved I suspect there is great pressure to lower costs.

Loma Linda was one of the first institutions to use proton radiation therapy. Initially, the procedure was intended for children with brain cancer. I recall one morning prior to my treatment, I passed a small child asleep or sedated with a shaved head with cross markers all over his/her head. I assume it was to calibrate the location of the treatment. The last day of my 2.5 months at Loma Linda was a reunion of sorts with men who had undergone treatment there. There were perhaps 150 men of all ages. When the speaker remarked and asked the question of how many had PSA before over 10..everyone raised their hands..he went up by 10 each comment until asking how many over 100..Two men raised their hands..Then he asked how many are now under 1.00....every man raised their hands. That moment and the times spoken to other men in the morning...most were physicians..I knew then, I made the right decision Total cost exceeded $125,000 not including housing food, etc. I did stay at March AFB, so the cost was much less than a temp apartment. It was one hell of an experience. LTC, US Army

@westernflyer
Yes heard about Loma Linda many times. Like Loma Linda UFHPTI was built in 2006 at a cost of 125 million dollars. That was a lot of money back then. I went to UFHPTI in 2023 as Mayo Jacksonville did not have proton radiation in 2023 but have built a new cancer center in 2026 and now can offer proton radiation.

I too saw at UFHPTI so many children with shaved heads. Children and well as many others were coming to UFHPTI from all over the U.S. and the world for proton treatments. I was shocked to see the entire right side of walkway going to each 5 gantries treatment rooms to see they were special rooms for children.

For those concerned about insurance, regular traditional Medicare does cover Proton Radiation. Yes it cost more but if anything can be done to fine tune the radiation beam and stop it from exiting body and affecting other organs and tissues which can be limited by having proton radiation I think especially for children with long life spans is a blessing in medical treatments.

The essential metric in proton radiation treatment is the amount of radiation and how many times the radiation is delivered. In my case, 2.5 months each weekday morning. I really did not understand the overall process, except for the difference between proton radiation and photon radiation (X-ray type). Therefore, the proton radiation oncologist is a critical factor in the success of treatment. If one does not have Medicare or other, the cost is prohibitive. In my case, I had Tri Care (military insurance...free); now I have Tri Care for Life. In all my years, I have not paid one cent for health care. Fortunate, lucky, and appreciable.