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

@jesse65, I received my Proton treatment in Q1 2023. I have not had any long-term effects, at least none that I am aware of! 🙂
I had some fatigue during the weeks of treatment, and if I recall correctly, it lasted a short time. Other than that, no other issues!!

@dandl48 same question, are you finishing side affects from your treatment, or are you just starting to have side affects after treatment?

@michael219 I like to hear good outcomes! Wishing you a long and happy life my friend.

Its been quite a journey for me from many years of active surveillance and an unsuccessful Tulsa Pro treatment. I am starting Proton Therapy at Emory on February 3 and will be glad to post information and any side effects that may occur.

@jesse65 The start of my Adaptive Radiation Treatment has been delayed for further testing, which unfortunately brings me to adding ADT to the Treatment. I chose to pay the exorbitant co-pays for Orgovyx rather than Lupron for four months- not bad at all.
I had markers and spacer done this week, start ADT next week, RT the next. Thanks for asking!

Ok, i'll bite - what is adaptive radiation treatment?

@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.

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.

@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.

@mlabus3 Adaptive radiation therapy is a relatively new approach where some kind of real-time, or almost real-time, monitoring of your prostate's position while the radiation is being administered. The purpose is to make modern IMRT or SBRT treatment even more precise.

Usually some kind of CT scan, MRI, or x-ray imaging is integrated into the RT device itself. It's designed to monitor for any involuntary body movements or intestinal gas bubbles that may happen during treatment and shift the prostate within the treatment field. If movement is detected the RT gets paused until you can be repositioned appropriately, thereby "adapting" that day's treatment to your prostate position that day.

The simplest form is taking a CT scan of your fiducial markers before each treatment to ensure you are positioned correctly. The most advanced is MRI adaptive technology where an an integrated MRI scanner connected to a computer automatically pauses treatment if needed (I understand is pioneered at UCLA and one of the only locations that offers this).

In my case, I have chosen RT that uses a CT scan before each treatment and the rad techs monitor x-ray images throughout the treatment. I believe the x-ray images are from the radiation exiting your body. It's not as fast as a computer pausing, but I believe a good trade off to spending 6 weeks away from home - there are very few MRI adaptive therapy devices in existence. Precision is one of my personal goals in treatment and for me this seemed like the best option.