What were your side effects of proton therapy both during and after?

After 10 days post completion of PT, I can say that things are pretty good.

I had some constipation at about half way though and that was a surprise. Also had some hemorrhoids which were again a new experience for me. Probably related to the constipation.
Not pleasant.

When you day PT are you saying proton radiation treatment? I finished on July 5th 30 rounds of proton radiation treatment.

The proton institute was outstanding. I was extremely impressed with their facility and radiation technicians.

I had the opposide on constipation. But found out it was diet as they had asked me to follow one that I did not. I also had the hemorrhoids flare up and was told irritation to rectum can cause them as well as constipation.

Did you experience and reduction in urine flow. I did not get this until several weeks into therapy. The velocity and strength of flow went down. The institude also said this most likely would occur and slowly improve. Exactly as they said.

One thing I liked about the proton institude was a ton of research given to you. Books, testimonials, and information on syptoms, what to expect as side affects and what to do if they come. They have a portal so you could call or send a portal message. I had the same radition techs for every radiation treatment and was assigned a specific radiology/oncology team doctor and nurse.

Still have to do PSA on going test and see radiology/oncology every 3 months for 1st year and then every 6 months for second and then only once a year until hit 3 year mark.

Finish PT at Mayo Rochester January 19, 2023. Experienced urinary restriction which I believe was due to SpaceOAR Hydrogel. This symptom went away after a few months... when the SpaceOAR is absorbed by the body. No ED or soft erection. Only noticeable difference is in amount of seminal fluid which is lower. Was told this was very probable event. PSA dropped from 10.5 to 2.57 in 3 months. Can take up to 3 years to reach new low PSA reading. Glad I went with Proton Beam and Mayo.

Best wishes for minimal side effects and most importantly an elimination of cancer.

You are blessed to have Rochester as they do offer proton radiation. The feedback to me has been that those who chose proton were glad they did.

Did you have any issues with hemmorids? When they put in my SpaceOar I had some discomfort from that for about 2 months and then started going away.

Could not bike ride during treatment because of Space/Oar but started afterward and hemmorids flared up. Could be just irritation or maybe rectum irritation from the secondary radiation as they did margins of prostrate.

The researched I used to make my decision to go with a provider who offered proton radiation was reviewing both Phoenix and Rochester proton radiation program for prostrate. This promotion versus the provider I was at saying no benefit of proton over photon was NOT what research and providers like Mayo Clinic Rochester and Phoenix, John Hopkins, and many others all promoting the benefits of of proton radiation for prostrate cancer.
Good luck

Yes, proton therapy.

Urine flow was very restricted and painful during treatment even with the Japanese version of Flomax. I stopped the Flomax after a few days of the end of treatment and slowly urine flow went not just back to normal but much better than pre-treatment Quite surprised by this, was not expecting at all.

Constipation completely gone but have to remember to drink sufficient water!

Just about 3 weeks since completion and while the treatment was kind of harsh at times, I am very satisfied with the lack of side effects currently. Will have to wait and see about any late toxicity that can occur anywhere up to a few years after treatment. The doc said the chances are low single digits but something to consider.

Yes, I had hemorrhoids. Never had them before. The blood on toilet paper and in stool at times freaked me out but doc assured it wouldn’t affect treatment. Was doing a 4 hour drive home on weekends too! Got a special cushion which helped but didn’t eliminate the discomfort.

I was surprised how quickly all side effects went away after treatment. I was expecting at least a month but not yet 3 weeks and all gone. I am only 62 so that may have played on my favor.