Chronic radiation proctitis: What specialty treats this?

Posted by lhs38 @lhs38, Jun 1 5:06pm

Proctitis developed 8 months after surgery. Tx with suppositories, sucralfate, APC, anti biotic, and currently ending 50 hyperbaric treatments; the latter showing only modest improvement the others none.. Where to now? I am finding most colo rectal and GI specialist have only seldom treated this. So what is apt to provide some benefit?who knows? which specialty? where? I would like to find a physician who has experience in this.

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I have proctitis from my radiation two years ago (spotted during a recent colonoscopy), but it rarely bothers me — just an occasional stabbing pain.

On the other hand, my radiation cystitis (bladder damage), which doesn't look any more serious on the camera, caused me considerable distress last summer.

The solution to the cystitis was a combination of some food/drink adjustments, medication (Myrbetriq), and mainly, spending 6 months retraining myself to ignore certain sensations and not feel like I have to empty my bladder every hour (or 30 minutes). I never tried hyperbaric treatment, although it is also available for the bladder — my urologist was planning on that next, if my other efforts didn't work.

It's still not perfect, but I feel mostly OK now. The bladder pain is noticeable mainly just sometimes at night, and I occasionally sleep the whole night through without getting up to go to the bathroom. But it was a long road getting here, with a lot of setbacks along the way.

Your solution may be similar — even if the proctitis isn't curable, it might become tolerable in time if you take a multifaceted approach, including discovering and avoiding foods that make it worse, learning relaxation techniques to reduce exacerbating the pain with stress, and perhaps some medications that your oncologist or proctologist can prescribe to help smooth the road for you (so to speak).

Best of luck! We truly are iron men, to be able to face all the challenges that come with prostate cancer.

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I have bleeding but no pain. I was told cauterization could stop the bleeding. However, my colon doctor when asked about the success rate he had was not very encouraging.........30% good results, 40% helped a little, 30% no improvement and in come cases made it worse. He said if it's just a few times a week to live with it.

He still wants me to have a colonosopy since my last was 12 years ago. That one was perfect as was the one before that. At my age, middle 80's, I have mixed feelings about it. I had extensive radiation since my Gleason score was 9 and the cancer had spread to pelvic lymph nodes. I know prostate radiation can cause bladder and colon cancer but how soon would it show up. My radiation ended a year and a half ago.

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@flax

I have bleeding but no pain. I was told cauterization could stop the bleeding. However, my colon doctor when asked about the success rate he had was not very encouraging.........30% good results, 40% helped a little, 30% no improvement and in come cases made it worse. He said if it's just a few times a week to live with it.

He still wants me to have a colonosopy since my last was 12 years ago. That one was perfect as was the one before that. At my age, middle 80's, I have mixed feelings about it. I had extensive radiation since my Gleason score was 9 and the cancer had spread to pelvic lymph nodes. I know prostate radiation can cause bladder and colon cancer but how soon would it show up. My radiation ended a year and a half ago.

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When I initially was told to expect to live 5–7 years (about 1½–2½ years before progression to castrate resistance and stronger treatments, which hasn't happened), I figured I wouldn't bother with colonoscopies any more, even though I was only 56 at the time, and both my father and maternal grandfather had died of colon cancer.

As my horizon expanded (there's no longer an official "life expectancy" for me), I approached my family doctor and asked if I should have my regular 5-year colonoscopy. She said 100%, and that I should be planning for the future in other areas (like avoid type-2 diabetes) as well. That was great to hear, when only a year early I'd believed I wouldn't have much of a future to plan for.

The gastroenterologist at the colonoscopy clinic wanted to meet with me first, to assess my health and verify the procedure would be safe for me, because my records just said "stage 4b prostate cancer" and "severe spinal compression and nerve damage" which sound pretty grim. When he saw that I was outwardly energetic and healthy, he had no reservations about going ahead with the procedure. He showed me the radiation proctitis on the monitor, and found and removed one small, non-malignant polyp, but otherwise it was just like my two previous colonoscopies before I had PCa.

At my age (59 now) and given my family history, I think continuing colonoscopies was the right choice. Colon cancer is almost fully preventable with 5-year screenings, and it would be very sad to beat prostate cancer only to succumb to colon cancer like my dad and grandpa did. I'm not sure what choice I'd make in my 80s, but I will say (from watching them) that wearing a colostomy bag all day isn't fun, and avoiding that alone might make the colonoscopy worthwhile as you prepare to enjoy your late 80s, your 90s, and hopefully even beyond.

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Ils38, you could try another 40 hyperbaric treatment. I've heard of hyperbarics working from 50 to 90 treatment. I made twenty with no improvement, but it is good for the rest of you body, too.
I was half crazy finding information for this as anemia set in. Finally found radiofrequency with a special wand called the Halo 90. A couple of nice things about the treatment: it works, it's painless, it restores the normal epithelium. The difficulty is in finding a practitioner. There is one at Scripps in San Diego. I scheduled with him before a data breach when they cancelled all non-essential procedures. There is Dr. Buxbaum at USC. I've had four treatments. It is completely effective except they only apply it where you are bleeding. Other areas will bleed as radiation damage continues to manifest years after treatment. The treated areas never rebleed. I'll send you the link for the article that got me looking. I called one of the authors and he would do the procedure except that his hospital doesn't have the equipment. Stanford had a physician willing to try though no one there had ever done the procedure. They had equipment because it is the same equipment they use for barrett esophagus. Buxbaum says he does the procedure all the time. I think he is a hospitalist. It isn't a procedure that anyone ever asks for. They usually do the procedure under anesthesia, but there aren't pain nerves in the rectal epithelium so I don't use anything and watch. I'm trying to access my own posts to get the article without luck. I send it when I'm home. Any questions meanwhile?

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@gently

Ils38, you could try another 40 hyperbaric treatment. I've heard of hyperbarics working from 50 to 90 treatment. I made twenty with no improvement, but it is good for the rest of you body, too.
I was half crazy finding information for this as anemia set in. Finally found radiofrequency with a special wand called the Halo 90. A couple of nice things about the treatment: it works, it's painless, it restores the normal epithelium. The difficulty is in finding a practitioner. There is one at Scripps in San Diego. I scheduled with him before a data breach when they cancelled all non-essential procedures. There is Dr. Buxbaum at USC. I've had four treatments. It is completely effective except they only apply it where you are bleeding. Other areas will bleed as radiation damage continues to manifest years after treatment. The treated areas never rebleed. I'll send you the link for the article that got me looking. I called one of the authors and he would do the procedure except that his hospital doesn't have the equipment. Stanford had a physician willing to try though no one there had ever done the procedure. They had equipment because it is the same equipment they use for barrett esophagus. Buxbaum says he does the procedure all the time. I think he is a hospitalist. It isn't a procedure that anyone ever asks for. They usually do the procedure under anesthesia, but there aren't pain nerves in the rectal epithelium so I don't use anything and watch. I'm trying to access my own posts to get the article without luck. I send it when I'm home. Any questions meanwhile?

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Thanks , I'd appreciate the Halo 90 info site. Maybe someone in the North Florida area is a practitioner.

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@northoftheborder

When I initially was told to expect to live 5–7 years (about 1½–2½ years before progression to castrate resistance and stronger treatments, which hasn't happened), I figured I wouldn't bother with colonoscopies any more, even though I was only 56 at the time, and both my father and maternal grandfather had died of colon cancer.

As my horizon expanded (there's no longer an official "life expectancy" for me), I approached my family doctor and asked if I should have my regular 5-year colonoscopy. She said 100%, and that I should be planning for the future in other areas (like avoid type-2 diabetes) as well. That was great to hear, when only a year early I'd believed I wouldn't have much of a future to plan for.

The gastroenterologist at the colonoscopy clinic wanted to meet with me first, to assess my health and verify the procedure would be safe for me, because my records just said "stage 4b prostate cancer" and "severe spinal compression and nerve damage" which sound pretty grim. When he saw that I was outwardly energetic and healthy, he had no reservations about going ahead with the procedure. He showed me the radiation proctitis on the monitor, and found and removed one small, non-malignant polyp, but otherwise it was just like my two previous colonoscopies before I had PCa.

At my age (59 now) and given my family history, I think continuing colonoscopies was the right choice. Colon cancer is almost fully preventable with 5-year screenings, and it would be very sad to beat prostate cancer only to succumb to colon cancer like my dad and grandpa did. I'm not sure what choice I'd make in my 80s, but I will say (from watching them) that wearing a colostomy bag all day isn't fun, and avoiding that alone might make the colonoscopy worthwhile as you prepare to enjoy your late 80s, your 90s, and hopefully even beyond.

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Thanks for the post. I'll probably go ahead and have the colonosopy. The peace of mind knowing is worth it, especially since I plan on living another 5 years into my 90's.

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@flax

Thanks for the post. I'll probably go ahead and have the colonosopy. The peace of mind knowing is worth it, especially since I plan on living another 5 years into my 90's.

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One hint: push hard for Pico Salax (little powder packets) instead of Peg-Lyte (big jug) for the colonoscopy prep —play your cancer card for sympathy if you have to.

Many clinics try to steer you away from Pico Salax because the patient has to remember to drink enough liquid on their own instead of having it all in one big, disgusting jug, but my prep with Pico was at least 10× less unpleasant than Peg-Lyte, and the results were just as good for a clear colonoscopy result.

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@flax

Thanks , I'd appreciate the Halo 90 info site. Maybe someone in the North Florida area is a practitioner.

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