Proton Therapy: any long term side effects? Any regrets?

@robertov
I have not head about increase in any radiation issues with hips. I do think it is possible as most treatments go in from the both side by hips.

I do know I got what looks like a sun burn on both sides from the radiation entry. It was not bad kind of line a light sunburn that then turned to tan mark. About the size of my fist. My R/O did say common to get the marks.

I can send a message (and will make a note now and asked about it. I had pencil beam proton radiation because I have a ICD/Pacemaker and they wanted a more precise beam. They also use a scatter beam but did not have that so no familiar with it.

Will let you know what R/O says about hip issues from proton radiation. I do know that is where my beam went in on both sides. Not sure if that is the entry for all prostate proton beam treatments but anohter question for R/O.

Thanks for checking with your RO. I think that was what was being referred to. Any more info you find out will be appreciated.

I was told to expect possible hip pain in 5 years or so especially if I was a golfer. Also that late rectal bleeding ( not extreme ) is possible . I am 5 1/2 months out, no hip or bleeding issues.

I had my 29 Proton treatments in early 2023, and so far, there have been zero side effects. I was not told anything about the potential for future hip pain. After much research, we chose UF Health Proton in Jacksonville, FL, based on their reputation with Proton and the fact that Mayo in Jacksonville did not have Proton at the time (it's coming).

It will be 5 years since I had SBRT Proton treatments in September. No hip pain to speak of except the pain there that I had prior to the treatment. Very low testosterone and leaking has just started.

Thanks, Appreciate your response. It’s exactly what I am trying to track down. That and the reason for it. It may have to do with the angles the proton machinery uses.

@michael219
Forgive me if I have brought this up before. I was at UFHPTI in 2023 for my 30 rounds of proton radiation. My R/O was Dr. Mendenhall and my gantry team was Blue.

UFHPTI has a great history and well over 10,000 proton radiation treatments. I am told they have patients coming from all 50 states and well over 50 countries.

I would have gone to Mayo Jacksonville as I am a patient there with all other care and treatments. I, like you, wanted to go the proton treatment way not photon. But like you mentioned they are opening a brand new cancer center in 2026 that will have proton radiation.

What does Mayo Jacksonville feel about UFHPTI. Per Mayo and UFHPTI they hired 3 of their R/Os to set up and run the new center. I am not sure if Mayo has physics department like UFHPTI. They study and recommend type of beams, measurements, etc. I met one they last time I saw my R/O there on 06/17 as he was making rounds with Dr. Mendenhall.

I have tried to describe their gantries as something out of Star Wars, the spacious and modern lobby, their changing rooms, etc.

@robertov
Sent my R/O (UFHPTI) a portal message on this and will let you know.

I do know during my consultations at UFHPTI going over treatments and side affects it was disclosed that the beam enters just above the hip on both sides and commonly causes a sun burn type redness as the treatments continue.

I got this redness about size of my fist on both sides and brought it up to my R/O there as well as my tech team. Both said yes common side affect. They all stated after treatments end will slowly turn to a tan look and then slowly blend back to normal look. They were right on.

But as I posted I have asked if there have been any addtional side affects beyond this to hips or hip area.

Thanks jc, that’s what I was looking for. My 1st RO seemed to suggest that was a drawback from Proton. I think he meant that having to go through the hips on each side was a limiting factor. I suspect he was building a case for the IMRT. He does use imaging while dosing, which Mayo (PHX) does not. That is a positive to me.