Treated 1996 · Posted 1997 · Updated 2009
My case: In July 1995 during a routine physical, my PSA was 11. A retest produced 11 again, so a biopsy was set up. Four samples later, the Gleason was determined to be 7. Something had to be done. I was given all the options except proton treatment, about which little was known by this urologist surgeon. Being a surgeon, he recommended a radical prostatectomy over all other treatments.
I consulted an oncologist, who outlined the same treatments as the surgeon, again without the proton treatment. I was advised by the urologist/surgeon that the cancer appeared to be localized in the prostate gland, so removal would more than likely remove the cancer, and all other problems as well. Based on that advice, I elected surgery.
After that was completed, he came in and said it was NOT in fact confined to the prostate, but had spread to the small glands attached to the prostate, and I would probably need radiation to make sure it was all cleared up. Very disheartening to say the least. Waiting to recover from the surgery, I was in my dentist's chair, bemoaning my fate, and he said the dentist across the hall had the same problem, so why didn't I go talk to him. Reducing a long story to a short one, the across the hall guy gave me his story; readings identical to mine, process same as mine, but he learned at a party about Proton treatment, investigated it, and went to LLUMC for treatment. He explained in great detail how it worked, and advised I investigate, which I did. I had records sent down, was called and told I was a candidate for Proton treatment, and did I want to come down for a consult, which I did.
My treatment was 60% protons, 40% conventional x-rays. The 60% never affected me at all; the 40% caused some diarrhea during the last week, which could be controlled by Imodium or some such over the counter stuff. The reasoning was that since it had been determined after surgery that the cancer had spread, they would expand the area after proton shots to hit some extra spaces with the conventional x-rays to make sure they got it all.
They did. My PSA has been <0.1 for the past 6 years. The urologist and oncologist opinion is, that the cancer is gone, period. I would strongly advise taking the proton treatment. If I had known of it before surgery, I would have opted for that completely. I steered two of my friends onto LLUMC, recommending against surgery, and they are happy with zero side effects, have very low PSA readings, and are 4-5 years from treatment. Because of the surgery, I have a few drips now and then, but mostly my degree of incontinence is very low. I am impotent, to my disgust, but my wife says at this age, no big loss (72 now for me, 70 for her).
Bottom line—go for it. I think it will definitely help, and side effects are minimal.
Update January 2009
I really don't have much to say. PSA readings have increased slightly over the past few years to about 0.27. My "family doc" believes that since my proton salvage treatment was in 1995/96, that I no longer have any cancer.
I have been given 12 more years of good life by the Good Lord, having had both a radical prostatectomy and proton radiation, despite the occasional mishaps because of leaks etc., and the impotence, a not unexpected situation all things considered. One never knows just what would have happened if proton radiation had not been undertaken since it is tough to have a control group to compare to. However, I would not hesitate a moment to undertake proton radiation. I THINK if I had it to do all over again, I would have done the proton radiation without the surgery, but that is 20/20 hindsight. I recall those also having treatment while I was at LLUMC including an 82-year-old gentleman finishing his last 3 weeks. His reasoning for choosing proton was that he wanted to continue his "relationship" with his girlfriend in the same manner as before, a condition not at the time considered possible with surgery. I never asked what was his "relationship" was, but just let my imagination run rampant, considering his age.
Again, I would counsel go for it, even before all other treatments. It seems to me the benefits far outweigh the possible side effects, all of which must be considered before any decision.