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Old 01-20-2011, 05:48 PM   #1
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Angry Ongoing post-radiation nightmare:

Well, as I have posted earlier, I have been suffering from the after effects of the radiation therapy I underwent over a year ago. I am speaking of both urinary issues (not being able to go - at all) and a colorectal issue ( ulcerations).

Thankfully, the urinary issue has been pretty much resolved itself. I do take 2 different alpha-blockers regulary and only have to cathaterize myself occaisionaly. I have hopes that soon I won't need to at all, but I'll be on alpha-blockers probably forever.

That is the good news. The rest of the news is not good - at all!

I had a visit with my gasterinterologist yesterday and he did a look-see, carefully, at my colon to see how the ulceration had changed in 2 1/2 months. He had not previously seen the affected area. My colo-rectal man had back in October and immediately ordered up a biopsy -big mistake- but no harm done. My GI man was horrified by what he saw. He didn't describe as a ulcer. He called it a crater! I sneaked a couple of peaks. It didn't look pretty.

So now I get to see the colorectal man again to get his input. I am a little leary of that since the biopsy. Never the less, it would seem that I have only 2 options. Keep taking the medication- Canasa - and hope that it eventually heals on its own. Tough when you think that there is a wound constantly surrounded by fecal matter and a fair degree of pressure, internal and external (as in trying to sit). The other option is a colostomy. I can barely stand to think about that. It would likely offer the best odds at healing. Either option will involve a lot of time for healing.

Anyone know of any other options?

What really bothers me is HOW DID THIS HAPPEN? The target area for the radiation was the prostate. The Dattoli Clinic has the very latest is equipment for the most exact targetting. Why do I have a CRATER in my colon?

 
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Old 01-21-2011, 05:10 AM   #2
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Re: Ongoing post-radiation nightmare:

Bwhitney
I am sorry for hearing your conditions. Surely, you are very susceptive to ulceration or the radiotherapist did an erroneous job, otherwise you would not be in that status one year after radiation. I had colitis after my RT for about 3 months but colitis as “craters” are not normal in a normal RT, even if you had colitis at first place. Twenty years ago during the time of the cobalt machines, a friend PCa patient put is case forwards in the courts for a case-result similar to yours (he won). Modern equipment does not go astray; they have a narrow tolerance from the initially set isodose plan. Either, the machine is faulty or the plan was wrongly input in the computer.

Colostomy surgery as you mention seems to have good results, and it can be temporary. You could restore to the initial path once you get better from the colitis. Worse cases of colostomies are related to colon cancer which is not you.

Hopefully you will recover. Just give time and do not despair.
Wishing you the best.
Baptista

 
Old 01-21-2011, 02:03 PM   #3
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Re: Ongoing post-radiation nightmare:

As a radiation patient I have been told to NEVER let a doctor take a biopsy of any area suspected of receiving radiation. The biopsy will never heal and will cause major problems. The doctor who did your colonostopy should have known this.
JohnT

 
Old 01-21-2011, 02:50 PM   #4
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Re: Ongoing post-radiation nightmare:

Quote:
Originally Posted by Johnt1 View Post
As a radiation patient I have been told to NEVER let a doctor take a biopsy of any area suspected of receiving radiation. The biopsy will never heal and will cause major problems. The doctor who did your colonostopy should have known this.
JohnT
I fully understand what you are saying. And the doctor should have known better, for sure. I had informed him that I was a radiation patient. I even knew better myself but at the time i was delirious from the pain. That is not the pain as a result of the biopsy. The pain was the reason I was there. Now I believe the risk of any procedure is not that it will never heal, it is that all the tissue in the irradiated area is super-fragile, and easily torn or perforated and any perforation through the the wall of the intestine, colon, urinary track will not heal.

The biopsy didn't help matters but that was not the initial problem.

 
Old 01-21-2011, 02:55 PM   #5
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Re: Ongoing post-radiation nightmare:

Quote:
Originally Posted by Baptista View Post
Bwhitney
I am sorry for hearing your conditions. Surely, you are very susceptive to ulceration or the radiotherapist did an erroneous job, otherwise you would not be in that status one year after radiation. I had colitis after my RT for about 3 months but colitis as “craters” are not normal in a normal RT, even if you had colitis at first place. Twenty years ago during the time of the cobalt machines, a friend PCa patient put is case forwards in the courts for a case-result similar to yours (he won). Modern equipment does not go astray; they have a narrow tolerance from the initially set isodose plan. Either, the machine is faulty or the plan was wrongly input in the computer.

Colostomy surgery as you mention seems to have good results, and it can be temporary. You could restore to the initial path once you get better from the colitis. Worse cases of colostomies are related to colon cancer which is not you.

Hopefully you will recover. Just give time and do not despair.
Wishing you the best.
Baptista


Something definitely went wrong and I am going to try and find out what. The machines these days are supposed to do a superior job of targeting the tumor. AS you say, the machine could have been faulty or the data entered was in error. I want an answer.

 
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