What are the side effects of Proton Therapy for Prostate Cancer?

I had 28 sessions of proton radiation during April-May 2021.

Regarding difficulty peeing —> I only had 1 day of adverse side-effects during my 28 sessions of proton beam radiation treatments. On the 3rd day of treatment, I had similar urinary issues. My RO told me that with some men there’s an inflammatory response to the radiation, and if that inflammation is near the urethra can cause the issues that I was experiencing. He recommended that I take 2 Tamsulosin/day for the remainder of the treatments. Everything cleared up by the next day; I haven’t had that issue since. My “recovery” from radiation treatments was relatively uneventful.

As for the “fecal matter leakage”:
> did you practice the full bladder/empty bowel routine consistently?
> did you use a rectal spacer?

Though proton radiation is very precise and accurate, if they mess up and overshoot the prostate, you’ll experience what you’re going through.

@mauiboy89
Are you having the high dose usually around 5 sessions or the low dose usual around 20-30 sessions?

If you are having high dose your side affects will show up sooner and by some feedback at a higher level that with low dose. I had 30 rounds of proton radiation and had no side affects for a month. Then started getting the more urge to urinate and higher number of times. But have to say was drinking a lot of water each day since had to drink 12 oz of water prior to each treatment.

Did you have the Space Oar? That is a gel inserted between colon and prostate that hardens between your prostate and colon. That helps move the colon away from the prostate to lesson radiation damage and irritation of to colon.

Did drink water prior to your treatments? That was to move your bladder away from prostate to lesson damage to in from radiation which can irritate it and cause it to be more reactive.

Don't hesitate to asked any question on MCC. There is no subject on MCC that is not to be asked as we have all been through this so nothing you can asked will shock us or something we have not already discussed. My R/O (UFHPTI) says they radiate the entire prostate and margins just to make sure they did not miss some cancer cells that biopsies and MRI did not see.

There is some discussion by some that their R/Os did not think the Space/Oar and drinking water is not needed then many R/Os like mine did think it helped reduce radiation inflammation to those organs and tissues.

Are you taking hormones? Those can affect you dramatically. I did not have them so can't directly comment on side affects from them but know I see posts about fatigue and other feelings.

I do know about half way through my 30 rounds I noticed a sun burn on both sides of my hips. I asked about it and said that is where proton beam enters and the radiation damages the skin just like a sunburn damage. So you can see the radiation does irritate anything it hits.

With proton radiation it enters body not at full dose but releases full dose at defined location and then stops and does not exit body like photon does. My sun burn stayed until my treatments stopped and then turn to a tan mark and then finally went away.

I did have increase urination, urgency went up, and slight fatigue. Now 2.5 years later have some dribbling problems but could be just old age (78) catching up. I do Kegel exercises but have learned to not wait so long to urinate if I feel the need to.

@brianjarvis
thank you for your helpful reply.
I am going to try full bladder/empty bowel routine.
thanks

@jc76
I am half way through my 20 sessions of treatment. Urinating and keeping my bladder full has not been an issue.
I did have the Space Oar inserted prior to my treatment. I am still having problems with the amount of times I have to move my bowels and its consistency.
I have had a few accidents where fecal matter has leaked on to my Depends underwear. my R/O recommended I take Imodium AD.
I'll see how that works out.
Thanks for your comments. It was very helpful.

Hello my friend

As others have said, do not be embarrassed by this or by bringing it to this forum! Everyone I have seen here is focused on trying to help each other and no one truly knows for sure what’s going to happen to their bodies with regard to how they react to radiation therapy.

I cannot speak to the 20 session treatment plan. I did the five sessions over two weeks. My urinary system was impacted the most and I am now eight weeks post treatment and it’s settling down pretty good. My bowels I could tell were perhaps a little bit more active than usual, but I wrote that off a little bit to my greater use of MiraLAX And psyllium pills to make sure that my plumbing was working well. Retrospectively I think it probably was the radiation even though I had space oar inserted. And when they do the five session therapy, I believe that they are a little bit more accurate. The inserted what’s called fiducial markers in the prostate and space or as well. I don’t know what they do to control overspray with a 20 session beam radiation? If anything? Making your oncology team know about any bad things happening is your best hope for getting good information on how to mitigate it.

I wanted to take proton therapy but the doctor on charge said I was not a candidate for proton therapy because I had an enlarged prostate. I was already experiencing problems urinating and he said the proton therapy would cause my prostate to enlarge to the point of being unable to urinate! I had heard great results about proton therapy !

@oldgreenpaint
Thank you for the information and advice. I am keeping my R/O team informed about my situation and they have suggested taking Imodium AD. I'll see how that works out, so to speak.

As radiation builds up in your system you may have issues with your bladder and bowel.
I did 44 proton treatments and issues came and went.
The good news is that they abate over time once treatment has ended.

Proton radiation: Loma Linda Medical 2010. 2.5 months or every weekday in the morning for proton radiation. Low dose with many visits to the "big machine". I played racquetball every noon while I stayed at the March AFB officer quarters the entire time. Low dose with more visits compared to high dose, few visits is more acceptable from the many comments, journals, opinion, etc read over the last 15 years. So, why the high dose and fewer visits? Because it cost less... The key is the radiation oncologist's "opinion" as to the dose of radiation and the time. So, spend time on researching the metrics of that decision...

@bg33
Thanks for your helpful information. I look forward to ending my treatment and everything returning to normal.