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.

I had proton therapy in 2018 for prostate cancer. The doctor told me that the treatment would not cause any other health problems. He was wrong. I had never had erection issues, but I have ED problems still, and they began with proton theray. Even though the doctor said if I could get an erection before treatment, I would be able to again, that was incorrect. I have used ED pills, which have lead to new problems. The pill does work and like many others experience, creates a dry orgasm. I am now 78, so that might be the reason too.
Three years after treatments I started having blood in my bowel movements. My GP referred me to a gastroenterologist. He found that the the walls of my bowels where perforated due to radiation leakage caused by the prostate treatment. This is caused radiation proctitis. They had to do a lazer treatment using a fiberoptic sigmoidscope. After two rounds, the bleeding did stop.
In 2022 I started showing blood in my urine, and my Urologist said that exstensive excersise or work, (i.e. me loading hay and putting round bales out for my animals) could cause it. Solution: drink lots of water until the blood was gone. It mostly worked, but I could always see specks of blood in the toilet.
Now in 2024 I have blood in my urine again that has not stopped flowing and has turned into ever larger clots. My treatment was different then most of the ones I have read. I was required to drink 16oz. of water before my treatment and then a balloon was placed in my anus and inflated and used to supposedly keep the bladder up and away from the prostate. I haven't had a complete work up on this new issue,yet, but that is the culprit, leakage. And a new doctor now says that taking ED pills didn't help the matter at all, as they weaken the walls of the bladder. More test to follow.
As I look at this experience I had a PSA of 5 and Gleason were 6.6 to 7.9. Now my PSA remains around .045 to .070 over the years. I know it often takes many years to finally succumb to prostrate cancer, so I look back and can't decide if I made the right choice. I have no other health problems, and wonder if I would have been fine to allow this very slow moving cancer to take its course.

Proton radiation at Loma Linda one of the pioneers of proton radiation therapy initially for children with brain cancer. Spent 2.5 months. PSA: 6.46. Gleason 3+3 with small localized cancer. Had two biopsies and both determined the same end state analysis-diagnosis.

Had no issues during or after treatment. I would play racquetball most days as I stayed at March AFB quarters during this time.

I think the difference between many who had proton radiation was the degree of cancer, the location, Gleason score and prevailing health at the time of treatment. But, I would recommend anyone with prostate cancer to consider proton radiation as an option for treatment.