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Old 08-23-2011, 06:47 PM   #1
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Question Urinary Incontinence After Radiation Therapy:

It has been two years since my treatment. I was treated with an aggressive program which has caused me a host of problems. Anyone following the threads I have submitted previously will know.

I had a diverting colostomy back in March plus a supra pubic catheter (one that comes directly from the bladder through the abdominal wall) to give an area of radiation ulceration of the colon a chance to heal. Shortly afterwards I noticed a certain amount of secretion from my penis. It was considered normal - a kind of mucous secretion, not from any infection or anything. It later increased in the daily amount and continued to do so. At my last visit to the urologist who will be performing urethral reconstruction in about a months time, I asked about this leakage. Regrettably, he said, the radiation had clipped my urinary sphincter.

He said that there has been great success with artificial sphincter implants if I should need one. Time was brief and we didn't get into it much further. I asked if that procedure could be done at the same time as the reconstruction but was told that it couldn't be done for at least 12 -18 months afterwards.

I am not sure that I do need one, but inclined to think so. My urine flow is currently through my rectum. Thank the Lord that my rectal sphincter was unaffected so I do have control at this time. My fear is that when the flow is redirected back through its proper channel I will have some serious problems.

Has anyone out there had to deal with urinary incontinence as a result of radiation therapy? Is my condition a permanent thing or temporary? I guess that's a little difficult to determine, but has anyone had this and had it improve over time? I know there are some exercises that can be done. What else is there? I would love to hear from anyone with experience with this even if it's not so good.

 
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Old 10-02-2011, 06:16 PM   #2
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Re: Urinary Incontinence After Radiation Therapy:

Hi bwhitney,

I'm responding to your post #1 of 8/23 with something I learned at the recent Conference on Prostate Cancer 2011. You wrote in part:


Quote:
Originally Posted by bwhitney View Post
It has been two years since my treatment. I was treated with an aggressive program which has caused me a host of problems. Anyone following the threads I have submitted previously will know.

... My fear is that when the flow is redirected back through its proper channel I will have some serious problems.

Has anyone out there had to deal with urinary incontinence as a result of radiation therapy? Is my condition a permanent thing or temporary? I guess that's a little difficult to determine, but has anyone had this and had it improve over time? I know there are some exercises that can be done. What else is there? I would love to hear from anyone with experience with this even if it's not so good.
In his talk Dr. Myers discussed Leukine. One key point was that it repairs some injury caused by radiation! Not only did he find that among post-radiation patients who came to his clinic, but he credited Leukine with being a big help in his own recovery from radiation side effects from his case of metastatic prostate cancer. (He is now doing very well and apparently has been cured.) I doubt that Leukine will cure all radiation problems, but it seems to help for many of them.

Take care,

Jim

 
Old 10-03-2011, 05:14 AM   #3
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Re: Urinary Incontinence After Radiation Therapy:

Thanks very much, Jim. I will definitely look into it. I was scheduled for urethra reconstruction last friday but I postponed the surgery. Quite frankly I just wasn't ready for more hospital time and weeks of recovery. I'll probably reschedule for December if the doctor will see me.

In the meantime I have spoken with Dr. Dattoli. He is trying to be encouraging although he knows I am not completely happy with my outcome. He has suggested a couple of drugs to try and feels that the incontinence issue will resolve itself in time. I would certainly like to believe that. I will mention Leukine to him.

He told me something interesting. In some 15,000 procedures he has performed, in only three cases has anyone needed a diverting colostomy. In each case a biopsy had been performed by another doctor. I guess that makes me case number four.

Thanks once again for all your support.

Bwhitney

 
Old 10-04-2011, 12:38 PM   #4
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Re: Urinary Incontinence After Radiation Therapy:

Jim, I emailed my nurse at the Dattoli Clinic and she said the following. Leukine is used to treat patients in preventing the reoccurrence of prostate cancer in some patients and also is used in patients that have been treated with chemotherapy to help recover their white blood-cell count. She felt that perhaps that what Dr. Meyers said may have been misunderstood. Could you reply to this, please? Thank you.

 
Old 10-06-2011, 11:33 AM   #5
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Re: Urinary Incontinence After Radiation Therapy:

Hi again,

I just checked my notes of the conference and did a little additional checking. I'll add comments in green. I'm responding to your post just before this one:


Quote:
Originally Posted by bwhitney View Post
Jim, I emailed my nurse at the Dattoli Clinic and she said the following. Leukine is used to treat patients in preventing the reoccurrence of prostate cancer in some patients and also is used in patients that have been treated with chemotherapy to help recover their white blood-cell count. She felt that perhaps that what Dr. Meyers said may have been misunderstood. Could you reply to this, please? Thank you.
My notes show that Dr. Myers made such a statement. Of course the notes are a paraphrase, jotted down rapidly, but I'm confident they reflect what he said. He was discussing Leukine as a main topic toward the end of his major presentation on rising PSA after surgery or radiation. The time was about 10 AM, give or take twenty minutes or so, about ten years almost exactly from the time the 9/11 attack was going on.

My notes read: "... also Leukine, repairs radiation injury. Crohn's disease 50% reversion." I believe the latter meant 50% of patients with Crohn's are able to revert to normal with Leukine, but that 50% could have been a subset of patients with Crohn's. Based on my notes and recollection, I'm confident he was going beyond what the nurse at the Dattoli clinic was stating. Tall Allen was also at the conference as he has mentioned in his posts, and he may be able to provide another account of what Dr. Myers said, especially since Allen is a veteran of radiation.

However, I was not able to turn up anything relevant in www.pubmed.gov, a site we can use on this board because it is Government sponsored. I did some additional research and found there are formal papers and articles, but they seem to be in sources that are not picked up by PubMed. I'm thinking this is another case where a doctor is working at the leading edge of the art, and the development being described is not known widely, even among some other experts. Of course, medical oncologists, like Dr. Myers, are more attuned to drugs, whereas radiation clinics are focused on radiation, with drugs as a supporting resource.

I hope this helps, and if you find out more, I would like to learn about it.

Take care,

Jim


 
Old 10-06-2011, 03:05 PM   #6
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Re: Urinary Incontinence After Radiation Therapy:

Jim, I just looked at my notes from Dr. Myers' presentation. He discussed Leukine as part of a second-line treatment along with ketoconazole and estrogen, if someone failed treatment for oligometastatic disease. He did say that Leukine activates the immune system and repairs radiation damage. He didn't explain further, but I took this to mean that the activated white blood cells are better able to destroy cells that have been genetically altered by radiation. I didn't think he meant that it could reverse fibrosis, necrosis or fistulae induced by radiation -- I know of nothing that can do that effectively.

Bwhitney, I was wondering if you have ever been tested for mutations of your ATM gene. Your reaction to radiation was so extreme that it raises the question of your genetic susceptibility. ATM is a gene we all have that helps us repair radiation damage to healthy tissue. When someone has a mutation of that gene, healthy tissues become very radio-sensitive and are destroyed easily. When someone has a mutation in both copies of his ATM genes, it can show up as a disease called Ataxia-Telangiectasia that presents in childhood with impaired motor control, a weakened immune system (lots of colds and other infections), sensitivity to X-rays and an increased risk of cancer. It is very rare to have mutations in both gene copies, but it has been estimated that 2% of caucasians have it in one copy of the gene, and this is probably much higher in those who have had cancer. With gene testing becoming more widely available, it may be possible to get tested for it. I'm beginning to think that every prospective radiation patient (EBRT, brachy or proton) should be screened. If you have such a mutation, I think it would mean that you ought to avoid any exposure to Xrays, CT scans, sun exposure, laser light treatments, etc.

- Allen

 
Old 10-06-2011, 06:11 PM   #7
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Re: Urinary Incontinence After Radiation Therapy:

Very good, Jim. I will submit this information to the Dattoli Clinic, but ask this time that Dr. Dattoli review it, or Dr. Sorace. It may well be as you say that they are more focused on the radiation side of the picture. And if it is a leading-edge treatment they may be, as yet, unaware of it. I would imagine that with Dr. Myers cred's and the relationship Dr.Dattoli had with Dr. Myers that they would give it more than a glance. I will keep you posted .

 
Old 10-06-2011, 08:20 PM   #8
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Re: Urinary Incontinence After Radiation Therapy:

Quote:
Originally Posted by bwhitney View Post
It has been two years since my treatment. I was treated with an aggressive program which has caused me a host of problems. Anyone following the threads I have submitted previously will know.

I had a diverting colostomy back in March plus a supra pubic catheter (one that comes directly from the bladder through the abdominal wall) to give an area of radiation ulceration of the colon a chance to heal. Shortly afterwards I noticed a certain amount of secretion from my penis. It was considered normal - a kind of mucous secretion, not from any infection or anything. It later increased in the daily amount and continued to do so. At my last visit to the urologist who will be performing urethral reconstruction in about a months time, I asked about this leakage. Regrettably, he said, the radiation had clipped my urinary sphincter.

He said that there has been great success with artificial sphincter implants if I should need one. Time was brief and we didn't get into it much further. I asked if that procedure could be done at the same time as the reconstruction but was told that it couldn't be done for at least 12 -18 months afterwards.

I am not sure that I do need one, but inclined to think so. My urine flow is currently through my rectum. Thank the Lord that my rectal sphincter was unaffected so I do have control at this time. My fear is that when the flow is redirected back through its proper channel I will have some serious problems.

Has anyone out there had to deal with urinary incontinence as a result of radiation therapy? Is my condition a permanent thing or temporary? I guess that's a little difficult to determine, but has anyone had this and had it improve over time? I know there are some exercises that can be done. What else is there? I would love to hear from anyone with experience with this even if it's not so good.

 
Old 10-07-2011, 06:10 AM   #9
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Re: Urinary Incontinence After Radiation Therapy:

Hi bwhitney,

I'm responding to your post #7, having read Allen's response.

I too can't imagine that Leukine would fix a fistula, but my impression from Dr. Myers' comments is that it is quite effective for some of the major vexing problems after radiation. Your approach should get us the answer.

Take care,

Jim

Quote:
Originally Posted by bwhitney View Post
Very good, Jim. I will submit this information to the Dattoli Clinic, but ask this time that Dr. Dattoli review it, or Dr. Sorace. It may well be as you say that they are more focused on the radiation side of the picture. And if it is a leading-edge treatment they may be, as yet, unaware of it. I would imagine that with Dr. Myers cred's and the relationship Dr.Dattoli had with Dr. Myers that they would give it more than a glance. I will keep you posted .

Last edited by IADT3since2000; 10-07-2011 at 06:15 AM. Reason: Corrected post reference right after posting.

 
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