Mild pain and constant peeing six months after radiation

@scottbeammeup offhand I do not remember what you said your final decision and your process was. Did your radiation machine have a built-in MRI? Did you do spaceoar?

I posted this is a new conversation, but it may interest you since it seems to apply to your situation. Look up cystitis and prostatitis for more information about treatment.
https://jamanetwork.com/journals/jamaoncology/article-abstract/2826069

@jeffmarc As a layman, I don't think this study proves anything other than after 12 years one can still feel the side effects of removal or radiation. With all do respect, it strikes me as misleading. Their data set included both those that had radiation and those that had their prostate removed. There data collection made no comparisons from one radiation machine to another (or for that matter the type of prostate removal that was done) but instead seemed to say, without addressing any form of radiation, the type of machine, the margins used that impact healthy tissue, that one could have more problems than people who were untreated, after a 12 year period.

I believe that with radiation, how much healthy tissue is exposed to radiation matters. Margins matter, and so do possible microcells, which is why the standard of care for many types of radiation includes the entire prostate plus a margin.

Without including the types of radiation machines, radiation methods and types of prostatectomies, the study conveys an incomplete conclusion that one better watch out, even after 12 years, for bad side effects. I was treated with the Mridian narrow margin built in MRI radiation machine and finished in 2023 with minimal symptoms. Potential microcells notwithstanding (which is one reason why we all continue to test), I would be surprised, if I am alive at 82, that I would be feeling new symptoms or exacerbated symptoms at that time. I am not sure but we will see. Certainly our treatment choices can have a short, medium and long term effect but I believe that is not in a trial/study vacuum that disregards technological advances.

One final thought regarding any study that does not include radiation machine type comparisons comes from the Mirage randomized trial study which concluded "In this randomized clinical trial, compared with CT-guidance, MRI-guided SBRT significantly reduced both moderate acute physician-scored toxic effects and decrements in patient-reported quality of life."

You have to realize the study started 12 years ago before they had the new radiation types they have today. I guess we’ll have to wait another 12 years to find out if the current radiation types do make a difference.

Radiation proctitis and radiation cystitis can be side-effects of SBRT. Often they don't show up at all; sometimes they emerge shortly after therapy, and sometimes they show up years later; sometimes they go away quickly on their own, and sometimes they don't. They can both be confirmed with imaging (a routine colonoscopy can see the proctitis, while a cystoscopy can see the cystitis: they both show up as angry, inflamed areas on the monitor).

There are treatments if it becomes unbearable, but if you can live with it without too much discomfort, I suggest letting it be and crossing your fingers that it just goes away. I, unfortunately, seem to have both for the long haul, but they don't bother me that often, so I haven't asked for anything like hyperbariatric treatment (pumping my bladder full of pure oxygen every day for weeks to promote healing); instead, I just go easy on the caffeine and stay hydrated. If I have a spicy meal, I know in advance that I'm going to be feeling it in both areas. I've seen specialists for both (proctologist and urological oncologist), and they've confirmed that it's not "cancer-involved", just another little thing to deal with.

@northoftheborder
Thanks for the information. I am dealing with bleeding, clots and leakage after proton therapy and cystoscopy and catheter. Wondering if it will stop? One clot got me to ER as it blocked urine flow. Not sure what next step is or do I just learn to deal with the blood, etc. every day.
any input?

@bgm1157 I'm sorry to hear that. Since you had a cystoscopy, you must have been dealing with a urologist or urology oncologist.

What did they suggest? How bad was the damage they saw on the scope (you might have had a chance to watch, too; I did for mine, and saw how my bladder lining had a fine network of angry red lines down near the bottom where the radiation damaged it).

There are treatments available, like filling your bladder with pure oxygen daily for a couple of weeks to promote healing, but only your urology specialist would know if they're appropriate for you. It sounds like you need to have a serious conversation with them.

Best of luck!

@northoftheborder Thank you so much for your reply! I talk to my radiation oncologist tomorrow. I will give my urologist a call to inquire what he saw! Thanks for that. Have you tr to oxygen treatment. Been reading up on that!
Thanks again. Much appreciated!