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Gleason 9 and had a kidney transplant 2 years ago

Graham49 profile image
4 Replies

Hi Everybody

My Gleason score is 5+4. The cancer has just penetrated the capsule but there is no metastasis. I have started hormone therapy and the medical team have proposed HDR Brachytherapy to minimise damage to my transplanted kidney, which is fairly low in the abdomen. My last PSA was 25.4. I have started a mostly vegan diet plus fish. Has anybody out there had a kidney transplant and got PCa?

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Graham49
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AlanMeyer profile image
AlanMeyerModerator

Hello Graham,

I have not had a kidney transplant and can't address that part of your query, but I have had HDR brachytherapy for a cancer that had penetrated the capsule wall, although it was only a Gleason 4+3 with a PSA of 10 - not as aggressive as your cancer.

I had Lupron, then one HDR treatment at the end of 2003, followed by 25 sessions of external beam radiotherapy, followed by another HDR treatment. Now, 15 years later, I have still had no recurrence of the cancer. The treatment was clearly very effective.

There were side effects. The main short term side effect, lasting about 5 months, was difficulty urinating that required tamulosin (aka Flomax). The main long term side effect was impotence, getting gradually worse for about 5 years. I don't know if that was primarily due to the HDR or the EBRT. Of course growing older doesn't help potency either.

As with other cancer treatments, I think that HDR brachytherapy effectiveness depends in large part on the competence of the doctors. If they are knowledgeable, experienced, and committed to doing the right thing for their patients, they'll position the seeds in the best spots and the outcome will be better than it would otherwise be.

Best of luck.

Alan

Graham49 profile image
Graham49 in reply toAlanMeyer

Thanks Alan

This is encouraging. How long were you on Lupron before and after the Brachytherapy and EBRT? Three months and three years respectively have been suggested for me. Have you followed any particular diet/exercise regime or take supplements?

Regards Graham

AlanMeyer profile image
AlanMeyerModerator in reply toGraham49

I don't remember exactly, but I think I was on the Lupron for about six weeks before the first HDR procedure. The original plan was for me to be on Lupron for a total of one to two years, however I developed elevated liver enzymes that indicated that the Lupron was taking a toll on my liver, so the Lupron was discontinued after two injections, one nominally good for 30 days and the other for 90. In practice, I felt the Lupron effects for about five and a half months before they wore off.

From what I have read, the Lupron provides diminishing returns over time. The first few months do a lot of good. The next few do a little more. The next do a bit more, but not as much, and so on. Your case is a more aggressive one than mine and it might be worthwhile to go on Lupron for longer than I did. There are other people in the group who may be able to offer more knowledge and experience about this than I can. You can start the Lupron, look up studies on how much you need, and stop if you have good reason to believe that its side effects are no longer justified by further benefits.

For exercise, I did pushups, situps, and work with lightweight dumbbells and I would jog on a treadmill. Before the Lupron I would do four miles on the treadmill 2-3 times per week. Once I got going on the Lupron my capacity fell and I was down to one mile three times per week, and at a lower speed. It exhausted me. Nevertheless, I kept it up and found that I had all the energy I needed for my daily office work and for taking long walks with my wife. To my surprise, I found I was even able to have sex. I had no desire to do so while taking the drug but I forced myself anyway and found that after 10 minutes or so of going through the motions, as it were, I would get aroused and be delighted with the results.

I don't remember all the supplements I took. The one that was most touted at that time was lycopene, but I'm not sure it's still as popular. Here are the U.S. National Cancer Institute recommendations:

cancer.gov/about-cancer/tre...

See also the "health professional" version (there's a link at the top of the page) for more technical information.

I also recommend searching for pjoshea13's recommendations on this or the "Advanced Prostate Cancer" forum here on HealthUnlocked.

Best of luck.

Alan

Graham49 profile image
Graham49 in reply toAlanMeyer

Thanks Alan, this is very helpful.

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