Rectal Damage From Radiation

I completed radiation treatment Mar 09, gleason 8, continued on hormorne treatment but has had continued rectal damage since then.  I've been told this is rare...am I alone right now.

LC Dickey

Welcome to HW, Lucious. There several guys here who have had rad. and can answer your question. In the meantime, feel welcome and introduce yourself..

LC,
They are indeed rare cases but I have some in my live support group. I have two EBRT guys in my UsTOO group that suffered some issues. I also have one guy who just had a terrible experience with a seed implant procedure. His issue is sphincter damage and complete incontinence that could not be repaired because of radiation damage. AUS was not an option either. Of the EBRT guys, one guy improved over time and while still not back to pre-treatment rectal function, he is doing well. They other EBRT guy suffered incontinence and uses a clip. This is very rare, but I have to believe that these are all attributable to poor application of the RT programs. I also know of some guys at the VA at a few locations that had terrible experiences with seed implants. This made national headlines and was attributed to inexperienced providers.

Here is the press release on the last one:
www.medscape.com/viewarticle/706366

Tony

Tud,
No intention of scaring anybody. The three men in my group did not use the doctor in the article, and lucious likely did not either. But I made it clear that it is rare that radiation delivers the SE's that are extreme. But I also want to point out that SE's from radiation are usually much later in life. Most won't have them but they do happen.

Tony

Did he give you anything, or any suggestions? Just curious about the expectations...

Tony

Hi Lucious,

I'm sorry that you are having such bad SE's from the radiation.  I had seed implants and about 13 mos later had several episodes of rectal bleeding, but usually only the first BM in the morning.

After informing my rad onco about it, he recommended that I get hyperbaric oxygen treatments at a local hospital.  After 50 two-hour sessions, I did get some relief, but not a cure.  I'm still waiting for the shoe to drop again, but so far, so good.  I take Metamucil (rounded teaspoon twice a day with my bone supplement) and that helps a lot.

If you Google "Bob Wall" (I need to check and make sure that it is still searchable), you will find a detailed regimen for treating rectal bleeding.  I did not adopt all of his regimen since my problem was relatively mild.  However, I did try the SEACURE (fish protein in a capsule), but stopped it because I developed gout (have had it before, so the SEACURE was probably not the cause).  I have also been taking 400 IU of Vitamin E and 1500 Mg of Vitamin C daily to help with rectal healing - can't be sure it helps, but I think it does.

I'm also on a bone supplement (I'm on Lupron 4 mos dose) called Prosteon available from Therologix.  My uro says its the best supplement for Lupron patients that he knows of. 

I don't know if the above will help, but it may be worth checking out.

Gene in Md

Goodlife, and I agree back with your sentiments. Not sure how many brothers here have been through more than one major RT regiment in their lives, but I went through 2 within a 10 year window, and both times they were hell on me, the first one still worse than this PC related SRT.

There is no free ride in our treatments. I am sincerely thankful that for most men, they can get through their surgeries, their seeding, their RT and SRT without major incidents, and that is a good thing. But all treatments come with risks, side effects, and chances of complications, regardless of how rare they may be while looking at stats on a piece of paper.

When you are the stat, it takes on a whole different meaning, trust me. Who could have guessed that in a little over 14 month from my open surgery, that I would be on my 12 catheter, and today was my 123rd day in a row on caths right now, not counting the over 100 days I was on one or the other prior to October 1. I am finding it harder to be patient, and starting to lose my normal cool attitude about the whole thing, i know its mostly the pain talking, but how much is one expected to go through?

So I say to all men contemplating their primary treatment. Choose slowly, choose wisely, do all due dilligence. If you can safely do AS, then spare your body and do AS as long as possible. If you can avoid surgery with a safe alternative like seeding or seeding with IMRT, then consider that, and if you absolutely need surgery, get the absolute best surgeon you have access to.

Hope for the best, plan for the worse, that's how I have always gotten through the medical maladies in my life. I want a happy ending as much as the next man here, trust me, but things happen, things that are just simply out of our control, and things that just don't go by the charts or nanograms. Reality is reality.

David in SC

Bill,
My experience with adjuvant Rt has been the same os your primary treatment. No SE's. RT is indeed lower in SE's, at least in the immediate time after therapy. Some people just don't do well with them, and I attribute that mostly to application than modality. Like every where else in choosing therapy, choose your doctors wisely. That stated, no doctor or center is without those bad experiences.

LOL, get your mach back to Vegas...I want to see the new wings.

Tony

Again everyone the feedback has been tremendous..we need our own chat everynight for prostrate cancer.  If there is not one plan to sign in 8-9:30 pm eastern mon-friday to live up our chat line.  I have not found an active chat line for prostrate cancer but thoroughly enjoy this forum. I went to FWB this weekend only to find one of my friends was going thru the same thing i was; as I mentioned this damage takes a long time to heal for some several months for others several years.  Some of you asked me what works....your diet is very important to ease pain I've tried protofoam and canasa suppositories, multi-vitamins,addt vitamin C&E Over a year of treating symptons I must say my pain and spasm have diminished and no longer like my initial spasm and pain period that lasted anywhere from 12-24hrs...thank U Lord...I will be on at 7pm on the prostrate chat and everynight during the week...be there or be square.....again thanks guys for all the Super feedback

Post Edited (Lucious) : 2/3/2010 12:33:29 PM (GMT-7)