Medical Forum / Diseases and Disorders / Prostate Cancer / June 2006
Seeding and Rectal Radiation Burns
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John Baker - 22 May 2006 19:32 GMT Hi:
I was seeded a couple of years ago, and at the time was told that unexpected side effects were unusual. However, I am now mildly incontinent, impotent and have recently found that I have rectal radiation burns. This latter problem, which may or may not be able to be cured, was something no one mentioned when I started on this course, and to put it mildly I am upset about it.
I post this to alert others to the potential for problems of this sort, which can be quite nasty and painful. You should ask your prostate seeder about his/her experience with this problem!
John Baker
I.P. Freely - 22 May 2006 20:13 GMT > Hi: > [quoted text clipped - 7 lines] > nasty and painful. You should ask your prostate seeder about his/her experience with this > problem! Just one more regrettable example of doctors' failures to address tx SE's in advance.
Let's hope your docs DO find a fix, John.
I.P.
LarryS - 22 May 2006 22:15 GMT What I thought were rectal radiation burns from EBRT turned out to be anal fisures, which cleared themselves over time. Are you sure they are radiation burns?
Larry
John Baker - 22 May 2006 22:54 GMT Larry:
Regrettably, yes. I had a colonoscopy (sp?) and was shown images of my insides, including the radiation burn.The doctors comment when he saw it was to the effect that , "I guessed that was the problem - I have seen a number of people who have had seeding and had this unanticipated result".
I shall see the him on Friday to find out what he plans to do about it.
John
>What I thought were rectal radiation burns from EBRT turned out to be >anal fisures, which cleared themselves over time. Are you sure they are >radiation burns? > >Larry ron - 22 May 2006 23:02 GMT Hi John...Hyperbaric oxygen is one potential treatment for such burns. I've read several posts on another NG where it seems to have done the trick. It might be worth looking into or discussing with your doc...Ron
Alan Meyer - 23 May 2006 16:21 GMT > Hi John...Hyperbaric oxygen is one potential treatment for such burns. > I've read several posts on another NG where it seems to have done the > trick. It might be worth looking into or discussing with your doc...Ron Hyperbaric oxygen is one of those therapies that some people consider helpful for almost everything and other people consider to be pure quackery.
It has clear benefits in cases like divers decompression sickness and carbon monoxide poisoning, where patients have an oxygen deficiency. The evidence for other benefits seems to be mixed. There are also potentially serious side effects.
See:
http://www.emedicine.com/plastic/topic526.htm
http://www.cancer.org/docroot/ETO/content/ETO_5_3x_Hyperbaric_oxygen_therapy.asp
Alan
ron - 05 Jun 2006 15:33 GMT just published...ron
J. Urol., Volume 176, Issue 1, Pages 87-90 (July 2006)
Hyperbaric Oxygen Therapy for Radiation Induced Proctopathy in Men Treated for Prostate Cancer
Marc A. Dall'Era, Neil B. Hampson, R. Alex Hsi, Berit Madsen, John M. Corman
Received 3 May 2005
Purpose Radiation proctitis is a common complication following external beam radiation therapy and brachytherapy for prostate cancer. While 95% percent of radiation induced proctitis is temporary and self-limiting, up to 5% of patients experience toxicities that are refractory to conservative management. Hyperbaric oxygen has a well-defined role in treating chronic wounds, osteomyelitis, hemorrhagic cystitis and necrotizing fasciitis. We reviewed our experience with hyperbaric oxygen therapy for radiation induced proctitis in patients undergoing radiation treatment for prostate cancer.
Materials and Methods
>From October 1998 to December 2003, 27 patients with radiation induced proctitis secondary to brachytherapy (4), external beam radiation therapy (16) or combined modality (7) for prostate cancer were treated with hyperbaric oxygen therapy at Virginia Mason Medical Center in Seattle, Washington. In all patients primary medical or endoscopic management had failed. Patients received 100% oxygen in a multiplace hyperbaric chamber at a pressure of 2.4 atmospheres absolute for 90 minutes 5 to 7 days weekly for an average of 36 sessions (range 29 to 60). Data were collected from a retrospective review of medical records following approval by the Institutional Review Board at Virginia Mason Medical Center.
Results All 27 men completed the planned course of therapy. Of patients with bleeding 48% showed complete resolution after therapy, while 28% reported significantly fewer bleeding episodes. Of patients 50% noted complete resolution of fecal urgency. Six of the 8 patients (75%) with pain noticed some improvement after therapy, although no patients reported complete resolution of rectal pain. Of patients with rectal ulceration 21% showed complete resolution of the ulcer on posttreatment endoscopy, while 29% showed evidence of improvement. Six patients (43%) had no change or worsening of rectal ulcers. Overall 67% of patients had a partial to good response, while 33% showed no response or disease progression.
Conclusions This series of patients showed a good overall response rate to hyperbaric oxygen for radiation induced proctopathy after other attempts at management had failed. Hyperbaric oxygen is generally well tolerated and it remains an important treatment option for managing this common and difficult disease.
Alan Meyer - 23 May 2006 16:46 GMT > Larry: > [quoted text clipped - 4 lines] > > I shall see the him on Friday to find out what he plans to do about it. John,
I doubt that there's anything he can do about it. However you may be able to treat it with regular doses of Preparation H or some similar petrolatum based products. I'm not sure that the petrolatum does anything to reduce the damage, but it can provide a lubricating barrier that reduces the irritation of the damaged tissue caused by bowel movements and by rubbing of the walls of the rectum against each other.
I also had radiation damage to the rectum. Most of the time it doesn't bother me, but sometimes it does. I use a generic Preparation H like product and it really helps a lot.
Good luck.
Alan
docsafari@hotmail.com - 22 May 2006 22:49 GMT Right on John. The same ^%$^% thing happened to me, coupled with chronic severe urine retention (11 months and still counting). The rectal problems actually extended to what they call Pelvic Floor Dysfunction, involving malfunction of all of the muscles and nerves in the pelvic floor. You might want to look into that, as there are therapies for it, including levator muscle massage, Interstim, and a bariety of others. Rectal problems also comonly show up months after seeds implanted.
Richard
> Hi: > [quoted text clipped - 9 lines] > > John Baker docsafari@hotmail.com - 22 May 2006 22:50 GMT Right on John. The same ^%$^% thing happened to me, coupled with chronic severe urine retention (11 months and still counting). The rectal problems actually extended to what they call Pelvic Floor Dysfunction, involving malfunction of all of the muscles and nerves in the pelvic floor. You might want to look into that, as there are therapies for it, including levator muscle massage, Interstim, and a bariety of others. Rectal problems also comonly show up months after seeds implanted.
Richard
> Hi: > [quoted text clipped - 9 lines] > > John Baker docsafari@hotmail.com - 23 May 2006 19:21 GMT I recommend you see a sepcialist in Pelvic Floor Dysfunction (PFD). They are familiar with the whole range of things that can go wrong down there after radiation. Other related terms you might run across are "Ani Levator Syndrome" (referring specifically to the levator muscle in the pelvic area) and "Chronic Pelvic Pain Syndrome". Check them out. Otherwise, a preparation like Tucks (or Prep H) can be soothing. Also, keep your stool very soft. that mean fiber, liquids, and maybe Polyethylene Glycol (PEG) .
I feel for you. i am going through all of the same s***. (Pun intended.)
Richard
Bob C - 23 May 2006 22:22 GMT John, I'm not sure exactly which side effects the radiation burns are causing you. Alan mentioned Prep H, which for me is a couple times a day application used primarily as a lubricant. The colon no longer removes water from the stool as well as it should, so for that a daily dose of Imodium AD takes care of most of that problem. Depending on diet and health, 1 to 1 1/2 tablets each morning are about right for me. An occasional tsp. of Metamusil helps to keep things smooth and fairly normal. My burns came from EBRT (after RRP), 5 years ago, and this has been the routine ever since.
> Hi: > > recently found that > I have rectal radiation burns. This latter problem, which may or may not > be able to be > John Baker John Baker - 24 May 2006 01:45 GMT Thank you all for your responses.
I am not quite clear how something like Prep H could help in my case, since the burns are internal and result in erratic bloody (bright red) stool. Unfortunately, the doctor has postponed my appointment (for his own reasons) and I shall be seeing him sometime next week, rather than Friday.
Ill let you all know what he says.
John
>John, I'm not sure exactly which side effects the radiation burns are >causing you. Alan mentioned Prep H, which for me is a couple times a day [quoted text clipped - 11 lines] >> be able to be > > John Baker Alan Meyer - 24 May 2006 01:58 GMT > ... > I am not quite clear how something like Prep H could help in my case, since the burns are > internal and result in erratic bloody (bright red) stool. ...
It might or might not help. You would need to use the applicator that comes with Prep H that allows you to squirt it inside the rectum.
If you're seeing blood in the stool, then I would think the surface of the rectum, i.e., the surface that faces the stool as it passes through the passage, is bleeding. It's probably raw and inflamed. The friction of the surface against other surfaces and against the stool is continually rasping that surface, making it difficult for it to heal.
Putting a coat of Prep H on it might give the cell walls facing that inner passage some relief from the constant friction. Do it very slowly and carefully with a well lubricated applicator so as not to do any more damage.
To see if it will help, apply it several times a day - after every bowel movement and at other times if there's a long time between them. Hopefully, you'll get some relief after a few days. I'd be prepared to do this for at least a week before deciding that it isn't helping.
The doctor might have some other treatments for you, but I wouldn't be surprised if they're just stronger versions of Prep H - i.e., a coating substance but perhaps with a prescription drug to assist in healing.
This has helped me and I still have to do it from time to time.
Good luck.
Alan
Warren - 24 May 2006 19:55 GMT John
I had radiation burns and eventually went on a strict diet: no seeds, no grain breads, no fibre, no tomatoes, no lettuce etc. I was also prescribed Pentasa. This went on for several years and my system finally healed. I no longer need to watch my diet and I no longer take Pentasa.
Warren, peace
> Hi: > [quoted text clipped - 15 lines] > > John Baker I.P. Freely - 24 May 2006 20:40 GMT > John > > I had radiation burns and eventually went on a strict diet: no seeds, no > grain breads, no fibre That REALLY surprises me, given that low-fiber diets tend to constipate us, and I'd think constipation would be especially bad with an irritated colon.
I.P.
Warren - 24 May 2006 22:02 GMT Surprising as it may seem, I did not have any constipation problems during those years.
>> John >> [quoted text clipped - 6 lines] > > I.P. docsafari@hotmail.com - 06 Jun 2006 02:55 GMT EXACTLY the same thing happened to me John. I also was not told about total urione retention (which I had for 11 months), nor general Pelvic Floor Dysfunction (where defecation ceases to work as well).....
So, yes, please alert others to these possible side-efects.
> Hi: > [quoted text clipped - 9 lines] > > John Baker I.P. Freely - 06 Jun 2006 05:27 GMT >> You should ask your prostate seeder about his/her experience with this >> problem! Probably not good enough. We should do our own research, and stop trusting these docs to tell us everything and make significant decisions for us.
I.P.
juniper - 06 Jun 2006 05:13 GMT > I was seeded a couple of years ago, and at the time was told that unexpected side effects > were unusual. However, I am now mildly incontinent, impotent and have recently found that > I have rectal radiation burns. This latter problem, which may or may not be able to be I am really glad you posted this, John. My impression of seeds has been that they are just about the mildest local therapy. The more I read, the more I wonder if this is true.
Our rad onc wants to do EBRT, then seeds in the prostate area, then an EBRT boost. Has anyone had this? Especially post-RP?
thanks, laurel
From Bob - 06 Jun 2006 07:36 GMT Laurel, if the prostate had been previously surgically removed, where does he intend to inbed the seeds, what is to keep the seeds from migrating to the lungs / elsewhere, if they are just deposited on the pelvic floor ??
I had palladium seeding on 4/25, after one month of luperon - 30mg. I am scheduled to have IMRT for five weeks, sixty days after the seeding
The first few weeks after seeding were hell, particularly the nights, only now starting to get some relief from side effects. When i go out i am very dizzy due to the high dose of hytrin (alpha blocker) i am on, to enable urination. When i bend down (change in posture) become very dizzy.
The reality seems to be that if you have urinary issues prior to seeding, the issues will be worse afterward.
No seeding is not a side effect free treatment solution . In my opinion the medical community has failed to identify those that do not require treatment for Pca, there is a very strong profit motive, to do some procedure.
juniper - 06 Jun 2006 16:11 GMT >From Bob wrote: > Laurel, if the prostate had been previously surgically removed, where > does he intend to inbed the seeds, what is to keep the seeds from > migrating to the lungs / elsewhere, if they are just deposited on the > pelvic floor ?? Very good question. Will ask him in more detail on Wednesday.
When he did a DRE he felt what he thought was remaining prostate tissue. Then he did an ultrasound and showed my husband 11-17gms of prostate tissue. I am pretty sure that my husband would not recognize the difference between prostate tissue and any other tissue on an ultrasound, so I am less that persuaded by this evidence.
There was an MRI done for programming into the IGRT machine, and that report did not mention any prostate tissue. Our endorectal MRI w/spectro (pre-tx) said a 40 gm prostate (Mayo said 30 gm but our entire experience with them was so shoddy I don't pay any attention to their #s). The surgical pathologist got a 40 gm prostate. Where is all this extra prostate coming from? I believe Dr. Grado is a very good or excellent doctor, but we come up against the fact that radiologists don't get feedback from their observations. He will never go in there and actually "see" this tissue. Also, Dr. Grado's 2 numbers (11 and 17) came from two different calculation methods as to size. He said the 2nd method was less exact (the 17 gm) but sometimes useful. (Sometimes not, maybe.)
We asked our local uro what he thought, and he said he found it surprising. He said it could be--anastomosis?--scarring. Since the surgeon had to do fingertip dissection off the rectal wall, I think the surgeon was in there enough to know. We see the surgeon also on Wednesday and see what he says.
At any rate, there is *some* tissue of some sort in there. Also, I think they put seeds on strings now, that increases placement control and reduces migration.
All I can do is ask the picky questions, talk with Steve to see what he wants/thinks, and go with that regardless of my personal preferences. I have to be extra careful about this, because I am scared of radiation and its SEs. I would be less scared if it was me, but he has a family history of lots of cancer, and his brother was burned with RT.
<snip some very helpful information>
> In my opinion the medical community has failed to identify those that do > not require treatment for Pca, there is a very strong profit motive, to > do some procedure. I think there does need to be more understanding of which prostate cancers are not worth treating. In my opinion, the SEs are so shocking that the bar ought to be raised pretty high. But then of course there is our experience, with biopsy results that were so minimal compared to the actual. There are not good enough diagnostic tools to make a decision to treat or not. Maybe when a real cure comes along, it will be less risky to wait and see how it develops. It seems like once it starts growing, it can really take off in a matter of weeks.
I think the tools they use, PSADT and PSAV, should be part of the decision tree. Much more than PSA itself (well, say, under 10). One thing I'm picking up about uros, they are just surgeons. They see, they cut. As far as extended treatment, they all have a set referreal (some to rad oncs, some to med oncs) that they learned back when, and that's all they know. They are not PCa specialists. There must be some of this with rad oncs, too. They see, they irradiate. I think the thing that makes med oncs *tend* to be a little broader is that they see these other specialists as part of their own arsenal. So they have a broader picture of treatment approaches.
All of this got way off of the point about PCa being overtreated. I think this is the point of the "don't get a PSA test" movement (ARGH! A PSA test is not a cancer test!). But if that isn't stupid. You could have a life threatening disease, so we recommend you just don't find out? THAT'S how they reduce overtreatment?
lf
Beverley - 07 Jun 2006 00:13 GMT From everything I've read and heard it is almost impossible to remove the entire prostate without damaging the bladder. Seeding is not really dangerous but is probably only as good as the physicist who does the mathematical calculations for the seeds. The doc only places them according to the map the physicist draws. .
They are not going to randomly scatter seeds into the prostate bed. My understanding is they will embed them in what remains of the prostate and in surrounding tissue. Everything has SE and seeds have theirs but under the circumstances I don't think SE's from seeding should be a big factor. Also remember the rad treatments have changed drastically in the last 20 years. A good center and good equipment will make a big difference. Bev
> >From Bob wrote: > > Laurel, if the prostate had been previously surgically removed, where [quoted text clipped - 72 lines] > > lf I.P. Freely - 06 Jun 2006 16:40 GMT > In my opinion the medical community has failed to identify those that do > not require treatment for Pca, there is a very strong profit motive, to > do some procedure. And/or a lopsided, cold-hearted devotion to maximizing our longevity at any monetary and personal cost.
I.P.
John Baker - 08 Jun 2006 13:46 GMT Follow Up:
I saw the "rectum" doctor yesterday, and since the colonoscopy I had not had any massive bleeding. He told me that I had definite radiation burns in the rectum, and that the symptoms would be with me for the rest of my life. However they would "wax and wane", and if they got bad again he would prescribe steroid enemas.
Right now that aspect is fine, although incontenence continues to plague me with accompanied erectile disfunction. These are addressed by a separate doc, who basically says radiation problems, and not much he can do! Others I have talked to say the same thing, so I guess I am stuck with them. Erectile might be helped by Viagra or other similar pills, and i will try it in due course, but he does not think I will get much joy from it! Nerve damage he says!
Oh well
Loose some and win some!
John
Steve Kramer - 08 Jun 2006 14:31 GMT > Follow Up: > [quoted text clipped - 17 lines] > will get much joy > from it! Nerve damage he says! Your butt doctor might be right on the money. I don't know. Never studied rectumology.
However, I have researched and read about and heard from real patients and experienced some wonderful things with regard to post-never damage sex. You doctor cannot possibly know whether there is nerve damage, how much, how bad or how long it may or may not take to grow back. He is certainly barking up the wrong tree if he tells you Viagra and other meds cannot help. And, well, let's face it. If they grow back or the meds do help, you WILL get joy out of it.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06 PSA .07 .05 .06 .09 .08 .132 Non Illegitimi Carborundum
judamd@aol.com - 08 Jun 2006 16:27 GMT I'm a surgery guy myself so I can't speak with experience or authority on radiation side effects. But, orgasms and erections involve different sets of nerves and the nerve damage that comes from surgery does not affect orgasms. I suppose it's possible the radiation impacts all nerves in that area but I doubt it, so there is still plenty of joy to be had. Maybe you need to talk to another doctor. Dave Perry .
> Follow Up: > [quoted text clipped - 15 lines] > > John Warren - 08 Jun 2006 20:26 GMT John, Although my damage was not as severe as yours, I did get relief from it by taking Pentasa and by having a strict diet: no seeds, white bread only, no grains, no lettuce, no raw fruit with seeds or skins, no nuts and vegetables were peeled. I got used to it. Eventually the damage healed quite well and I can now eat most foods.
Hope this helps.
Warren, peace
> Follow Up: > [quoted text clipped - 23 lines] > > John
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