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I have been researching proton radiation as a treatment option for myself. There a few long term evaluations except the one done at Loma Linda. It was a fairly positive account. There is also a web site and the book by Robert Marckini who is on an advisory board there at LL. All are quite complimentary.
I would appreciate any unbiased or possibly negative feedback; if there is such a thing.
Thanks very much. Ray.
Although you ask for unbiased feedback on Proton Beam Therapy, that’s hard to find. The men who have had the therapy are almost universal in their praise of the therapy, the results and the experience of having the treatment at Loma Linda. The only negative feedback I have seen is a comment from Dr Charles ‘Snuffy’Myers that he had never seen such anyone with such serious collateral damage as those who had Proton Beam therapy. On being pressed it became clear that there was only one such patient and he had been treated as part of an experimental group at one of the other proton beam sites – with a dose that was simply too high.
" The dearth of proton facilities is largely due to their high upfront cost. It can easily take $100 million or more to construct the football field-size building needed to house a particle accelerator, the multistory rotating machinery that surrounds each treatment chamber, and heavy concrete shielding walls. The huge price tag means institutions that offer proton beam therapy have often had to go through financial contortions to do so. M.D. Anderson, for example, had originally sought to own its proton center outright and wanted to run it as a nonprofit. When the University of Texas didn't come through with the money, however, planners turned to a consortium of private investors instead. "
"Because of Internet buzz, the morbidity associated with proton beam therapy is underappreciated," says Anthony Zietman, a radiation oncologist at Mass General who specializes in prostate cancer. Many of his patients, he says, are surprised to learn that proton beam therapy exposes the bladder and rectum to high doses of radiation and does, in fact, carry a significant risk of causing impotence. Although preliminary research has suggested protons may be superior to conventional radiation for prostate cancer, there's a lack of randomized studies (the type doctors consider most rigorous) comparing the two—and standard radiation techniques are improving all the time. "
"Loma Linda, which has been using protons to treat men with prostate cancer since 1991, has published promising results. One study, for example, found major rectal and urinary side effects among less than 1 percent of Loma Linda patients; it didn't specify rates of sexual side effects. Those types of problems are risks associated with other radiation treatments or surgery. "
I assume you have read the experiences of men who have had the treatment on the Yana site – if not I’d point you to the story of Fuller Jones who has written a book on the subject.