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@bobvan

Thank you for this info. May I ask a few questions? How long did you stay on Lupron? And how long have the negative side effects of Lupron lasted? Do you know how common the urination pain is among proton patients? Why did you wish to stop the Flomax? Your side effects sound worse than what I have heard from most others. Do you fell that is true, or are your side effects representative of most proton patients you have met? I certainly wish you the best in your recovery. Thank you for honestly sharing..

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Replies to "Thank you for this info. May I ask a few questions? How long did you stay..."

The Mayo staff said that the urination issue is common since they can't protect the uretha from the radiation. It's not a problem, if I take the flomax. The first time I stopped taking it to see what would happen. After a couple days, the pain came back. That was about 4 months after stopping the treatment. The second time we were on a trip and I forgot the flomax. That was about 8 months after the end of my treatment.

In regards to lupron, I had 3 shots 6 months apart. My Gleason score was 8. It became clear to me that not everyone has the same treatment. I had 20 radiations and some had as many as 44. Also, some didn't have any lupron treatments. I asked my doctor why the difference and he said it depends on the severity of the problem. I don't know if you've had a bone scan and MRI of your organs. Mine were clean, which is why I got only 20 treatments. One guy had his cancer spread outside the prostate and he got 44. Your radiation oncologist will consult with a team of doctors to see what treatment you should receive. I also met one guy who had it spread to his lungs and received chemo and radiation. They treat each case separately and try to make sure the cancer doesn't come back. That's the job of lupron. Even if you have surgery, you should take steps to prevent any recurrence. There's some good research that supports the use of lupron to prevent any recurrence.

Best of luck to you on your journey. Take it all in.