Treated 2003 • Posted 2003
"The stranger who overheard my conversation with the nurse and told me about Loma Linda and Proton treatment was Ambassador Joseph Verner Reed, Undersecretary General for the United Nations, former proton patient and member of the BOB!"
A rising psa can be dangerous to your health. Anyone with prostate cancer knows that. Hopefully my testimonial will help people learn how problems can develop if you put too much trust in the wrong doctor.
Five years ago my psa was 3.0. My M.D. did not do a DRE, nor did he make any comments about my psa. Two years later I decided to have another psa measurement while in NYC (We live on St. Croix). It was 7.5 and my cardiologist said that I had better see a urologist, which I did. He did a DRE, felt nothing but didn’t like the psa, so I had a biopsy.
I called him, and he said that I should come back to NYC and have treatment. In the meantime, he prescribed Casodex. Since we were entering hurricane season on St. Croix, I could not come back to NYC. Four months later we were back in NYC and my PSA was up to 12. The first urologist was away, so I was referred to another M.D. He did a DRE, felt nothing and said that the psa of 12 was the result of a biopsy, and that I should do nothing but check again in six months, which I did. Now the PSA was 14 and he said continue watchful waiting. This M.D. had excellent credentials and was well known in his field, so I had every reason to feel secure in his guidance.
In six months we were back in NYC and I went for blood work. FORTUNATELY the nurse did not include a request for a psa. When I questioned why it wasn’t on the list, a gentleman standing there at the lab who overheard our conversation said, "PSAs are very important. Meet me by the elevator after you are finished." He proceeded to tell my wife and me all about Loma Linda and proton treatment. I asked, “If proton treatment is so great, why don’t other hospitals have it?” He answered, "COST" . . . and he gave me his card.
When we got back to St. Croix, we met a woman from Florida who had a friend that had just come back from Loma Linda. When I called him, he said that I should go to Bob Marckini's web site, www.protonbob.com. He also said that his MD in Florida pooh-poohed proton treatment in spite of the fact that Jacksonville, Indianapolis and MD Anderson in Texas were building Proton centers. A call to Marckini convinced us that LLUMC was the place for us.
Meanwhile we went back to NYC and the next PSA was up to 17. The doctor was not there but a bone scan and CT scan were done. His associate said that the results were negative. Happy day? No!! The next PSA was up to 23. We then made reservations to go to Loma Linda. Meanwhile the esteemed doctor sent me a letter. He wrote that if it weren’t for PSA's, I never would have had a biopsy and wouldn’t have known that I had prostate cancer, and that when it became clinically observable, at some time in the future, "something can be done.” I guess he assumed that at 77, I would probably die of something else. In fact he actually wrote that, “A psa of 17 may be important, but maybe not”!!
We arrived at Loma Linda Jan 6, 2003. Maggie said that she immediately felt we were in Utopia. Everything that happened during our two months there proved her right. But our initial meeting with Dr. Jabola was upsetting to say the least. Although my psa at LLUMC was back to 18, he felt that I ha an aggressive cancer, and that it probably was outside the prostate, and into a lymph node. A prostascint proved him correct. So, having just proton treatment would not get to anything far outside the prostate. He prescribed 16 proton treatments and 28 conventional photon treatments, and he put me on a 4 month Lupron injection and advised that I should stay on Lupron for two years.
As many proton graduates have learned, we learned that our “experts” back home, know very little about LLUMC and proton therapy. My doctor kept referring to it as “photon treatment.”
Here I must add and conclude my message by saying that as most other patient have said, LLUMC is a super, world-class hospital. The staff was wonderful. We established friendships with many fellow patients, some of whom we stay in contact with, thanks to the Internet. Thanks to Gerry Troy and his staff for. . the list of things to do, restaurant trips, and those unforgettable Wednesday night meetings. At one meeting, a patient expressed the wish for treatments to end soon, so he could go home. I got up and said that I wished there were a way to stretch out the treatments so that we could stay longer!
I do admit to getting a bit worn out the last week of treatment. But where else is there a health center/gym./pool that can equal the Drayson Center. Where else can one visit Death Valley, Joshua Park, Hollywood, San Diego and run out of time. Bob Marckini’s prediction was right on target. Before treatment, he told me, "You are in for one of the best vacations of your life." He was right!
Now that I’m back home in St. Croix, I promote proton therapy by talking about my Loma Linda experience and distributing copies of testimonials from the BOB website, www.protonbob.com, as well as LLUMC material.
I would like to express my special thanks to the radiation therapists in Gantry 2 who administered those 16 proton treatments, and those over at conventional radiation where I had 28 photon treatments.
Having just read the minutes of the Wednesday night support group meeting, that Dr. Slater attended, and learning what he had to say about the magic of protons, I can't imagine anyone with prostate cancer NOT going to LLUMC.
Bob Foster - St. Croix, USVI
Post Script: The stranger who overheard my conversation with the nurse and told me about Loma Linda and Proton treatment was Ambassador Joseph Verner Reed, Undersecretary General for the United Nations, former Proton patient and member of the BOB!