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External radiation for prostate cancer

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Posted 11/22/2011 4:59 AM (GMT 0)
I went through external radiation for prostate cancer and finished Dec 21, 2010. Three months later I started getting burning hen urinating and other pains and was diagnosed with radiation urethritis and radiation prostatitis. It hasn't improved and the consensus of opinions at several urologists and oncologists is that I will likely have it the rest of my life. Some say that it may go away in a few years. In the meantime, I have to sit on two separate pillows to keep my "middle" form sitting on anything hard. Nothing helps. Has anyone experienced these symptoms and have they lessened or gone away over time? Has anyone found anything to lessen the pain when urinating or sitting?
Posted 11/22/2011 6:02 AM (GMT 0)
I'm curious what your protocol was before the procedure. Where you instructed to drink a large glass of water 30 minutes before each procedure?
Posted 11/22/2011 6:11 AM (GMT 0)
Sandy,
These cases are rare and there are few doctors versed in dealing with treating radiation damaged tissue. I will say that treatment is possible as I have seen some guys get better. One of the guys in my support group had a rising PSA as well as nasty SE's. He decided on salvage prostatectomy to treat the cancer. He didn't get good disease control, but he said most of his pain issues went away and even though he still had minor incontinence he is glad the pain is gone.

I am not sure if a surgeon will do this procedure without a relapse. I know a surgeon that treats extreme prostatitis with laparoscopic RP. He's easy to look up. There are other treatments that help radiation damage cases such as time in a hyperbaric chamber. The cases I know of that have done that are for acute radiation induced proctitis.

If I was you, I would get more doctors involved. Places like Memorial Sloan Kettering and Mayo Clinic have advanced programs dealing with these issues.

Tony
Posted 11/22/2011 9:15 AM (GMT 0)
Sandy
Not had this sort of problem after SRT myself.
My immediate reaction was to think of Hyperbaric chamber. (If I remember correctly it involves sitting for a few hours at a time for a few days in a pressurised "room" with a higher percentage of oxygen in what youe breathe in than a normal atmosphere: the extra oxygen helps stimulate the healing of damaged tissue)
A risk with surgery now to remove the remains of the prostate is that there might be even more scar tissue that would not heal properly. Or in order to cut at an undamaged margin they might have to remove a lot more tissue and therefore there could be a risk they'd leave you very incontinent etc.
You say nothing helps. Do you mean pain meds as well (including gels up the penis)? And have they suggested any changes to what you eat and drink to alter the chemiistry (acidity) of your pee so that it burns less? And how is your sexual function, does sexual activity make your prostate react badly?

Welcome to HW by the way.
Alf
Posted 11/22/2011 2:23 PM (GMT 0)
Squirm: I was not instructedto drink a large glass of water prior to radiation treatments.
Posted 11/22/2011 2:27 PM (GMT 0)
Tony: thanks. I'll call Mayo Clinic. Although I was at SCRIPPS and UCSD in San Diego both their oncology and urology departments as well as several in Phoenix and was told that I had to live with it and just hope that it gets better. I'll look into Hyperbaric chamber.
Posted 11/22/2011 2:30 PM (GMT 0)
Sandy....I just finished mine in October and have no pain at all. You should have been told to drink 30 Oz of water 1 hour before each treatment. I was told I needed a full bladder every time and they did the Ct scan or xray of the bladder on the same machine each day to see if my bladder was full enough. If not I was told to go drink some more water and try l;ater.

Not sure if thats the problem but could be.

The reason is that a full bladder will push the prostate away from other healthy areas that dont need to be radiated and cause pain down the road...at least thats what they told me.

Posted 11/22/2011 2:38 PM (GMT 0)
Alf:
I won't take pain meds becuase I only have the pain when peeing and I don't want to have the adverse reaction of feeling light headed all day that I get. The trade off is that I can stand the pain for a few seconds compared with feeling bad in the head all day. I have adjusted my diet to have less acid and my sexual function is not affected any different than the changes after radiation. They have offered me the gel, but I figured that by the time I put it in many times a day - and the inconvenience of having to do it - that the trade off was not worth it - till the pain gets to a level that I can't tolerate. Right now I can tolerate the uncomfortable feeling. It 's only about a 5 on a scale of 10 and many times it is only a 2 or a 3. Until it gets worse, which I don't know that it will, I'll keep looking for ways to lessen the feeling. It if stays the same the rest of my life, I can live with that if I have to.
Posted 11/22/2011 2:55 PM (GMT 0)
Csper 319:

I was mistaken. I did drink a large glass of water prior to each treatment.
Posted 11/22/2011 7:23 PM (GMT 0)
Hi Sandy12,

I did not have anything like that and ended my treatment in Oct.  Sorry that you are experiencing this.  Have you tried taking Ibuprofen or Tylenol?  Are you on flomax?  Flomax did help me when i was taking radiation as I went thru a period when i had difficulty peeing = painful.

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