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Cancer: Prostate board


[QUOTE=panthersfan7;3780266]...Regarding the Proton treatment, could you tell me about your side affects, any impotency issues, any incontinent issues?
Any side affects during treatment? Who was your doctor there?... Does the Proton method kill all the prostate cells or just the cancerous ones and versus other types that kill it all so hopefully you do not have a recurrance and have to be treated again as the now healthy cells turn cancerous down the road? I am just so confused now.
Do you know some way to talk to men who have had the Proton treatment?

Glad to read that my postings have raised your interest in checking this out further. I'll start by asking a couple questions-- your age, PSA trends, Gleason score? Also, have you had a second opinion on the biopsy- something that's easy to get from a lab that specializes in reading these, like Bostwick.

I can respond to some basic questions, but wonder if you've obtained the Marckini book "you can beat prostate cancer". There's much more in-depth
coverage there than I can give, and I highly recommend your getting this right away. (If it were not for that book, I would likely have just had robotic surgery in Charlotte- although I wasn't convinced that 375 or so procedures gave enough experience.)

You'll read about the group of past and present patients in the book- currently there are 3500 "members". I signed up and that's where I was able to search the members' list for men near me in age (I was 64), geographic location, similar PSA, Gleason score, etc. I contacted 20 or so by email and followed up with a few with phone calls. My contact with one person in particular was what got me to schedule a consultation in Jacksonville (rather than waiting for one that I was going to have at Loma Linda, California). He had just begun his treatments there. My doctor at University of Florida Proton Center is Nancy Mendenhall, who happens to be the medical director of the facility- but she may not be taking on many new patients now.

Side effects during treatment were really only minor ones- about two to three weeks into the process, I had a reduced urine stream, urgency, and some burning. After a few days on Flomax, those symptons subsided. I continued the Flomax until a couple weeks after my treatment ended, and now have no medications at all related to this. I may get up once during the night, which is less often than before treatment. Incontinence would be a very rare side effect of proton treatment. I don't know of anyone that experienced that. As far as ED issues, proton is probably similar, or somewhat less what occurs with other forms of radiation- and can be dealt with in many cases with Viagra or Cialis. There may be a period when there is a reduction in performance- maybe a period of 2-4 months. This is discussed in the Marckini book. Surgery seems to offer both the best and worst outcomes related to impotence-- but you can't be sure which camp you'll fall in.

The radiation does not kill all the cells- the healthy ones survive and the cancerous ones don't. The radiation does target the entire prostate and a small margin around it, to insure that no parts are missed. Because the prostate is still functioning, some PSA continues to be produced, so the figure doesn't go to zero. It's tracked initially every three months and then the cycle increases, I think after a couple years. Mine dropped from about 4 to 1.6, then 1.1, and 0.9. (I get my one-year test soon.) Within one to two years, there should be a low point and then you want it to stay at that level for the foreseeable future.

Hope this info helps a little. But get that book (among others that are available too). It seems confusing for a while, but if you take control of your destiny and don't blindly accept the doctors' beliefs, you'll one day soon
know what's best for you. That may be brachytherapy (with or without supplemental external radiation), robobic or open surgery, IMRT, or proton beam. Please let me know if I can answer any more questions.