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Proton Therapy for prostate cancer

Prostate Cancer | Last Active: Jan 22, 2021 | Replies (55)

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@wrig1jam

Thx for all the info. Can you share the long term effects you are having from the ADT and radiation?

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Replies to "Thx for all the info. Can you share the long term effects you are having from..."

I had 3 six month doses of Lupron beginning November 2018. I had the typical side effects, but in November 2019 they tested my bone density and determined that my bones had weakened enough that I should get an infusion of Reclast to strengthen my bones until my testosterone recovers enough to strengthen my bones. They tell me that for every month on Lupron, it will take the same number of months for your body recover. This fall I started to notice some tenderness in my breaststroke and formation of a mass in each. I had it checked out at Mayo and it was diagnosed as Gynecomestia, which can occur in older men and can be caused by an imbalance between testosterone and estrogen. My energy isn't back to pre Lupron, but could be from getting older.
In terms of proton beam therapy, I had pain during urination after my 5th dose. They gave me Flomax to deal with it. Up to 6 months later. I had a lot of urgency when I urinated. One person called it the 90 second rule. You have 90 seconds from the time you feel the urge. He even plotted out all the public restrooms in his area in case he needed them. The urgency has subsided now. However, this fall my stream decreased and it was harder to empty my bladder. Mayo staff said the walls of urethra could become less flexible. We've doubled the dose of Flomax and it's helped. Flomax can raise blood pressure and cause light headedness, but mine has held steady fortunately. My urinary issues may not be common, so you may not have any problem.
Although I have had some issues, my quality of life is still pretty good. I realize I had cancer that was successful treated and can live with side effects. The important consideration is what's best to treat the cancer. Having advanced prostrate cancer is much worse.