I struggled with the decision. I wrote up my research and decision process. I WANTED Protons to be the right answer for me. I actually cried when I called Loma Linda to cancel my appointment. Cost, distance, and time were not the deciding factors. Protons were covered by my insurance. I have hundreds of thousands of frequent flyer points in my airline account, and a supportive spouse who said she would manage and bring the kids to visit if I had to be at Loma Linda for 3 months. I had selected an apartment that would have been suitable for working remotely near the hospital. I was all set.
Then I met my surgeon, one of the premier Prostate Cancer surgeons. In an hour consultation with him, it was clear I was going to do surgery. I was scared of the outcome and risk of incontinence and ED at 41, but the fear of still having a prostate as is the case with radiation that carries the chance of getting the cancer again with limited options post treatment didn't make sense for me. And this was assuming that the Proton Therapy was successful.
That being said, had I been older with other competing health issues that complicated surgery, it is certainly a viable option with seeming good outcomes and less risk of serious side effects.
So research, weigh the pros/cons, and follow your gut. Intelligence and a good decision making process will lead you to the right answer.
Good luck with your decision.
43 yo. now
5/07 PSA 4.65 at routine physical
6/07 biopsy Gleason 7 (3+4)...diagnosed at 41 y.o.
6/07-9/07 manic research and interviews with physicians across the country in search of the "right" decision. I went to Mass General in Boston, Loma Linda, University of Chicago and Northwestern.
9/17/07 - RRP at Northwestern Memorial by Dr. William Catalona. Thankful the father of the PSA test was right here in Chicago.
Post op path report confirmed Gleason 7 (3+4). negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.
9/27/07 - catheter removal...let the games begin...
12/31/07 - threw out the pads (I only had used 1 pad per day for protection against minor drips)
I started Trimix 8 weeks after surgery with success. I hope someday I won't need injections, but I hope more that my PSA stays at 0 forever.
9/17/08 One year past surgery and doing well. PSA less than .1 and ED continues to get better and showing reasonably good results using Levitra which for a long time did nothing.