I'd been watching my PSA rise slowly but steadily for several years, and when it hit 7.6 in the summer of 2007—anything above 4 is generally considered high—my urologist said it was time for a biopsy. Not a pleasant experience, that biopsy—a 10-needle sample done without anesthetic of any kind (and of course I had ridden my motorcycle to the appointment which made for a pretty miserable trip home). But worse than the pain of the biopsy, it showed up positive for cancer. It was a very small find—just 1/10 of one of those 10 needles with a Gleason score of 6 (low moderate), but cancer nevertheless. I was shocked. No one in my family had ever had cancer of any kind. The doctor scheduled me for radical prostatectomy (surgical removal of the prostate) in early 2008. I began to get ready for what I understood would be a difficult surgery with a long recovery.
When I told my counselor, Dr. Charles Keller, he said, "Oh my God! Don't do that! That's a terrible surgery!" He told me about another client of his who had undergone some kind of different radiation treatment at Loma Linda in California, and suggested I check it out. I called Loma Linda, and got another shock: The phone was answered by a real person—the very person I needed to talk to—not a mechanized system, and when she said she'd call me back and did so the same day, I realized Loma Linda must not be your ordinary, run of the mill hospital. She said she'd send me materials.
Meanwhile Amy picked out 3 books for me to read. I'll give specifics about those books in a future entry, but suffice it to say, by the time I went in for my pre-op appointment, I knew more about prostate cancer and treatment than my urologist. Now that may seem like a pretty over the top claim since he's got the degree and years of experience and I've read 3 books. But I leaned through this experience that medical specialists are narrow in their knowledge. As someone (actually a physician) told me one time: When you're a hammer, every problem looks like a nail. Some details later.
Also by the time of that pre-op appointment, I'd decided I would not be having surgery. I would choose proton radiation treatment. I had already lined up a consultation with Dr. Bush in Loma Linda for later that year.
Then the next big surprise. My PSA, taken in preparation for the appointment, dropped to 5.5. The urologist said, "Let's go back to watchful waiting and do another biopsy in May." When I told him about Loma Linda, it was clear he had never heard of proton radiation. He asked quite a few questions about it and took notes, but he recommended that I hold off on that process as well until after the next biopsy.
As part of my preparation process, I began attending the monthly Man to Man prostate cancer support group sessions at the American Cancer Society, and I learned some amazing things.
But this has grown long enough at this point—this blog entry, that is, not my prostate—so I'm gonna write: To Be Continued.
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