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

@jc76 I asked about the gel and the Emory doctors said they don't use it any more as it was unnecessary. I was very surprised and pushed back but they said they can control the process so they stopped using it a few years ago and have had no issues. They do stress the full bladder/empty colon requirement so that will take a bit of planning I'm sure!

Thank you guys so much for sharing your experiences. I am 72 and in great physical condition except for this prostate situation. It seems like most guys have similar experiences, some more intense than others. I will know more over the next several weeks and will be glad to share.

@dderiso
I had 30 rounds of pencil beam proton radiation at UFHPTI.

I had minor side affects. I had more problems with trying to time my drinking of water prior to treatments than anything else.

As you go through treatments the side affects usually start but not right away. You may get some fatigue several weeks in. I did but was minor and was told to expect it. Exercising really helps keep it to minimum.

About half way in I got like a sun burn on both sides of hips where proton beam entered. I was advised about this too and other that seeing it was not a problem. It went away several weeks after ended treatments.

Quite common is some urinary issues. It is caused because the radiation also hits the urinary vessels and seminal vessels. Not every one gets them and we all react differently.

Are you going to have Space/Oar. How about drinking water prior to treatments? Both can help with side affects to your colon and bladder.

@jc76 So you had Proton beam therapy prior to, or instead of, radical prostatectomy? You mention seminal vesicles, and they are usually removed with the prostate since they will no longer be needed with the prostate. They have co-functionality.

I had Proton over a year ago. If you decide on proton be sure to utilize spacer not traditional balloon, much better for rectum. I feel good, fully functional in all areas at 70 years old. Some lingering stomach issues but they have subsided. Everything I read says
It’s the same as IMRT but at my age I should have ED , maybe that comes later. Also get a prostox test before treatment. All this is just my opinion talk to doc.

@dderiso I have some very specific data regarding proton and spacers if you would like to review it, it is quite illuminating. California proton speaks to it as well, late bleeding / proctitis are no fun. If you would like the study I can forward.

@neilmartin What is Prostox?

@neilmartin Yes, I would really appreciate the data that you are referring to. Thank you!

I had 25 sessions or proton beam IMRT plus one HDR procedure. I had the outpatient placement of SpaceOAR and gold fiducial markers prior to the start of the IMRT.

Though I never had leakage, bleeding or impotence...I did have frequent and urgent urination post procedure several months. In fact, night time was the worst with waking up every 1 - 1.5 hours a night to urinate. However, I am happy to report that 9 months post treatment my frequency is back to pre-treatment normal. I have no other side effects (incontinence, impotence, pain or bleeding).

So thus far, I feel very blessed to have chosen radiation vs. surgery.

I went to Mayo's, Rochester. They recommended 5 Proton treatments. Being over 70 years of age, surgery was not an option. In preparation for the 5 Proton treatments, I received Space Oar and 2 tattoo markers smaller than the head of a pin. The oncologist told me ahead of time that I would not need to be lightly sedated for the procedure unless I wanted to. When the tech was ready to begin the Space Oar placement, he highly recommended that I go along with sedation. I am very happy that I decided to do that. Before being put in la la land I was told they would be taping my penis and testicles to my abdomen to keep them out of the way of injecting the Space Oar. Due to the light anesthesia, I was never aware of what was happening. I could hear the voices of the other 3 people in the room, but not hear what they were saying, thus being spared the additional embarrassment from having the procedure along with comments. The 5 Proton treatments were completed Nov. 2023. So far, have not had any permanent ill side effects. I did experience dry orgasms but only for about 1 month. I also had slight problems with urinating, but 3 weeks of Flo Max took care of that. There has been no bleeding or any other problems that I know of. Subsequent blood tests every 6 months have revealed cancer to be undectable. I have never had to get up in the night to urinate. The 5 Proton treatments were completed in less than 2 weeks which was a huge plus since I live 400 miles away. Mayo's and American Cancer Society need to be commended for providing free lodging while undergoing treatments or Chemo.