Salvage Radiation Induced Proctitis

[billd9946]

I completed salvage radiation around a year and 3 months ago. Since then I’ve had issues with my gut, specifically cramps in the morning and irregularity. This week I had a routine colonoscopy and asked the doc to advise whether he could see any damage resulting from radiation. He advised that I have mild proctitis with some rectal fibrosis.

I have read that damage from radiation can continue and/or show up many years after radiation. Has anyone else been diagnosed with proctitis following salvage radiation, and what was your experience? I’ve read that the sooner one gets on top of the issue, the better. Have you been provided with any sort of treatment? Is it ever too soon for treatment? Should I expect this to worsen over time?

Thanks in advance for any feedback.

[Tall_Allen]

3 months was probably too soon for a colonoscopy - instrumentation can damage friable tissues. It sounds like the proctitis is minimal. I advise leaving it alone (Anusol with cortisone if you have tenesmus) and letting it heal on its own.

[billd9946 in reply to Tall_Allen]

Hi Allen. Thank you so much for your response! I had my first colonoscopy around 3 months after radiation was completed. I specifically asked how long before I should wait to do the colonoscopy (was already beyond the 5 year recommendation, but delayed due to pandemic) and the radiation oncologist said 3 months was sufficient. Thankfully, there was no bleeding during that colonoscopy. However, that 1st colonoscopy failed due to “inadequate prep.” That prep was the same as I always do, so I thought maybe the issue was radiation injury related. My recent colonoscopy was a follow up to the failed one, so it was 1 year and 3 months following the completion of salvage radiation, and almost 1year following the failed colonoscopy. I’ve read that at the first sign of proctitis, treatment should be initiated. Are you thinking that given my current condition is tolerable and there is no bleeding, I should leave well enough alone? Should I assume my condition will deteriorate?

[Tall_Allen in reply to billd9946]

"I’ve read that at the first sign of proctitis, treatment should be initiated...Should I assume my condition will deteriorate?" This is counter to everything I've read. Do you have a reference?

[billd9946 in reply to Tall_Allen]

Sorry, I don’t. I try to stick with whatever my Google search returns that is reasonably recent. Much of my conclusions are from piecing together information learned from multiple sources. I know that radiation can cause problems many years after the actual therapy… I’ve actually read up to 30 years. And I’ve read some horror stories about proctitis and how severe cases can led to a colostomy. Pretty scary stuff and I’m trying to stay a step ahead.

[Tall_Allen in reply to billd9946]

I stay pretty current on this. No need to upset yourself over 1 in a million events.

[billd9946 in reply to Tall_Allen]

Thank you. I know you’re very well informed and I value your feedback.

[BerkshireBear]

I also had a bout of radiation proctitis about 18 months after treatment. This was about 17 years ago so I don't recall details. And of course doctor's rules and advices may well have been quite different back then, but as you are finding out each doctor seems to have his own opinion. My RO said it's rare; but the doctor who did the colonoscopy opined "we see lots more than the ROs admit to." I was fortunate to be able to watch the colonoscopy live and noted that each time the instrument touched the wall there was a volcano-like erruption of blood. Definitely inflamed and sensitive! I was given some steroid suppositories and a cream called ProctoSol (no longer listed), and told it would clear up in a few days and it did.

[billd9946 in reply to BerkshireBear]

Seventeen years later and you’re doing well… that’s fantastic! Gives me reason for hope that my course could be similar. Thanks for your input!

[billy1950]

With a BCR , it was suggested that i do salvage HD brachytherapy (radiation) However, i had EBRT 17 years ago and don’t want more radiation for the same reasons proctitis and crytitis. I didn’t have a RP like you., etc. Not sure if i am 100% positive that there isn’t any cancer outside of prostate. I did have a PSMA last July which showed nothing outside…Wondering how much did the doctor talk about before you had the salvage radiation…also a gay man living in upstate NY.

[billd9946 in reply to billy1950]

Hi Billy. I thought long and hard before doing salvage radiation. Actually, I started hormone deprivation therapy in September 2016 in preparation for the salvage radiation, but pulled the plug. Since that time I was watching my PSA slowly tick up and up, until I was advised that once it reached .5 my chances for cure would be much less. I too had 2 PSMA scans, but nothing was found. I finally decided to take the plunge, just in case the cancer was still confined to the prostate bed area, and after therapy my PSA went from .42 down to .16. However, it later began an upward trend and is now .24. Hindsight is always 20/20, but now I know the radiation was unsuccessful. I just move forward from here…

[Janhpr]

Hi my husband had Radiation to the Prostate in 2019, he has Proctitis frequency urgency and some blood not everyday day but weekly, he has had Cea blood test which came back normal he does not want a colonoscopy as after his biopsy in 2008 he bled a lot with clots. A recent CT Scan said diverticulitis, but this is interring with his quality of life feels he has to wear Tena pads and always worried if he is going out that he might have an accident, having a low fibre diet as much as possible. Presently on 3rd Lu 177 for widespread Bone mets which is giving him severe fatigue, your comments might help him