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Looking for a Radiation Oncologist for Radiation Proctitis

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Posted 2/20/2019 3:49 AM (GMT 0)
I am looking for an experienced Radiation Oncologist who has successfully treated patients with Radiation Proctitis. I believe it would also be helpful if the physician was knowledgeable with Proton Beam Radiation Therapy and its side effects. I live in a suburb of Minneapolis, MN so the Mayo Clinic is certainly a candidate for such an expert.

I was treated for Prostate Cancer in the fall of 2013 in Philadelphia, PA with Proton Beam Radiation (using “pencil beam” vs “scatter beam” radiation treatments). For the past couple of years I have noticed some small blood stains in my some of my stools. They seemed to come and go so I did not seek any treatment.

I finally had the Mayo Clinic look into the blood stains and a colonoscopy resulted in a diagnosis of “evidence of Radiation Proctitis” in my colon. A couple of months later I had a Sigmoidoscopy at the Mayo Clinic and it showed a small area of blood in the lower part of my colon. I was able to view the entire Sigmoidoscopy procedure on a monitor and saw the small area of blood. The attending doctor proposed an immediate Argon Plasma Coagulation (APC) medical procedure which I declined. The attending doctor also gave me the option of self-administered Carafate enemas which I accepted. I wanted to take my time deciding the best path to take to resolve the bleeding in my lower colon which the Carafate enemas provided. Unfortunately my medical insurance company (BCBS) declined the Carafate enema path and suggested I use Sucralfate enemas instead. Carafate is very expensive and the generic option (Sucralfate) is far less expensive. I am currently pursuing getting a prescription for Sucralfate enemas.

The Mayo Clinic has classified my Radiation Proctitis as “mild” so I am looking for a non-surgical treatment to resolve my case of Radiation Proctitis.

I have been advised to see a Radiation Oncologist to discuss my options. The two doctors I have seen so far at the Mayo Clinic are Gastroenterologists.

I would be very grateful for recommendations of a great Radiation Oncologist with the expertise I have described above.
Posted 2/20/2019 5:10 AM (GMT 0)
I'm not sure a radiation oncologist would be able to help you. They would be well versed as it being a side effect of radiation but would refer you to someone else for treatment. In my opinion you have the following choices:

1. If the bleeding is mild and does not affect your laboratory hemoglobin and hematocrit, most would recommend no treatment.
2. If the bleeding is severe enough, either Argon or formalin are the best choices to treat. A gastroenterologist is usually the one to apply these treatments.
3. Carafate enemas are safe but usually not effective.
4. Hyperbaric oxygen treatment--This may help but takes time. I'm not sure how well insurance pays for this. My radiation oncologist said this would be his choice if I ever needed to treat. I would choose argon though if the bleeding was severe enough to cause anemia.

I had exactly what you have and it lasted for 2 1/2 years. The gastroenterologist I saw told me he would treat if I wanted but advised against it. In his opinion, it generally is best left alone. I agreed to have no treatment and it went away on its own.

Thanks
Paul

Post Edited (PDL17) : 2/19/2019 10:15:44 PM (GMT-7)

Posted 2/20/2019 5:21 AM (GMT 0)
I had a bit of radiation proctitis along with an internal hemorrhoid. My PCP sent me to a GI doc for treatment saying the RO would do the same. My was bad enough that they did a little laser treatment and I've not been bothered with it since.
Posted 2/20/2019 7:01 PM (GMT 0)
I am in the Twin Cities also. Only other local suggestion might be Colon and Rectal Surgery Associates (affiliated with MN Gastro now I believe) where they specialize in that part of GI tract, worth a call probably. The U of M is where many trained so that might be call also. I visited the founder (Stanley Goldberg retired) many years ago and had a couple colonoscopies from them. He apparently wrote the book with others on colon stuff (he showed me the book).

Good luck
Posted 2/20/2019 7:14 PM (GMT 0)
I have chronic radiation enteritis, and found that the GI docs are much better at treatment that RO's, who don't specialize in radiation proctitis...no surprise to me. I think you best bet is Mayo's GI clinic. They are the best, and they know you already.

BTW, I've been treated with canasa and sucralfate suppositories, which both help, and seem to work better than enemas. I've also heard about good results from hyperbaric treatments. Most of the time we just have to wait it out, giving the body time to heal.

Good luck.
Posted 2/20/2019 7:17 PM (GMT 0)
I also had radiation proctitis (blood in stool) about two years after radiation therapy. After hearing my complaints, the RO who had treated me organized a colonoscopy for me. The gastroenterologist used his magic argon source during the procedure which stopped the bleeding. Whether treatment was absolutely necessary, will never be known as the bleeding might have stopped on its own. It often does.
With that out of the way, I will say that the above comments are spot on.

I am puzzled why you (imtls) didn't go along with the argon plasma coagulation procedure. It worked for InTheShop and me.
Posted 2/20/2019 8:44 PM (GMT 0)
Anecdotal: When my 74-year old husband stopped taking baby aspirin after reading research that heart benefits are not particularly beneficial in older men who haven't had a heart attack, his radiation proctitis bleeding stopped within days.
Posted 2/21/2019 2:15 PM (GMT 0)
Thanks to all posters. You have been very helpful. To answer: ” I am puzzled why you (imtls) didn't go along with the argon plasma coagulation procedure. It worked for InTheShop and me.” I probably would have gone with the APC but a nurse told the doctor they were not prepared for the APC procedure and that the nurse could go and get it. That gave me a little more time to think and since I did not know what APC was and I what I had seen on the monitor was a small open wound, I decided to take the time to find out what an APC procedure involved. I also told the doctor I wanted to start with the least intrusive remedy which was the enema option. I am satisfied with my choice.

Hopefully, I will not be going on a long journey in order to get the bleeding stopped.

One of the reasons (one of my total guesses) I was looking for a RO was because one possibility of the creation of the small open wound in my lower colon is the number of times doctors have used their finger to examine my prostate. They are poking around an area that has been radiated and I believe it is possible one of the pokes scrapped the colon wall. I do know I had 2 colonoscopies a couple of months apart and no open wound was observed. I also was told NOT to have a doctor examine my prostate with their finger for 6 or 12 months after I was treated in 2013.
Posted 2/21/2019 2:29 PM (GMT 0)
Why would you still be having DREs after what appears to be successful treatment? I have not had one since my diagnosis. My uro says that as long as my PSA is stable and in the proper range, there is no reason for him to be feeling around a totally radiation ablated prostate.
Posted 2/21/2019 10:09 PM (GMT 0)

spouse21 said...
Anecdotal: When my 74-year old husband stopped taking baby aspirin after reading research that heart benefits are not particularly beneficial in older men who haven't had a heart attack, his radiation proctitis bleeding stopped within days.

Good point. I had forgotten that my RO suggested I stop aspirin for a while to see if that would stop the bleeding. After consultation with my cardiologist, I did stop for about two weeks as I vaguely (!) remember. In my case this didn't work.

Anyway, if anyone is pondering about discontinuing a blood thinner to stop GI bleeding, consult with a cardiologist first.

Post Edited (Sr Sailor) : 2/21/2019 3:16:39 PM (GMT-7)

Posted 2/21/2019 10:15 PM (GMT 0)

JNF said...
Why would you still be having DREs after what appears to be successful treatment? I have not had one since my diagnosis. My uro says that as long as my PSA is stable and in the proper range, there is no reason for him to be feeling around a totally radiation ablated prostate.


My RO did 'poke around' with his favorite gloved finger and declared my prostate to be 'soft' two years after therapy. This was good, but I tend to agree that this process isn't as informative as a PSA test.
Posted 2/22/2019 2:00 PM (GMT 0)
I'm pleased to say that there hasn't been a digit up my bottom since my RP two and a half years ago. But reading this makes me wonder what it would even feel like (sorry, TMI) having had so much nerve tissue cut away.

I haven't seen my RO since the final week of treatment. As I understand it he is now retired. But six months after completing ART, a colonoscopy did confirm radiation colitis. And the adventure continues...
Posted 2/22/2019 4:23 PM (GMT 0)

RobLee said...
....six months after completing ART, a colonoscopy did confirm radiation colitis. And the adventure continues...

No $hit....pun intended ;)
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