Life-and-death decisions come slightly easier when they rest on an informed base. I know. For 20 years now, I've had a modus operandi for dealing with potentially life-threatening medical problems, of which I've had several: I follow what finance writer James Surowiecki calls the "wisdom of crowds." I poll independent experts -- many of them -- on what they consider to be my best course of action. Eccentric and out-of-the-mainstream ideas are welcome. Ultimately, as a physician myself, I aggregate these ideas. With my own vested interest in my survival and my well-being, I become the final arbiter of these potential courses of action.
So far, my way of operating has been extraordinarily successful by any objective standard. That's good to know, because I'm about to rely on it again. But let me explain.
I was first diagnosed with prostate cancer at the tender age of 36. Subsequently -- without much in the way of multiple opinions at that time -- I went through the conventional treatments of radical prostatectomy (surgical removal of the prostate) and, soon after, radiation therapy to the prostate bed -- the place in the pelvis from which the prostate was removed. (The margins of the surgically removed prostate were "unclear," indicating that malignant prostate cells remained behind.)
Five years later, in 1989, I was faced with a new problem: It became apparent that my PSA, or prostate-specific antigen -- a marker for prostate activity -- was rising significantly. Somewhat arbitrarily, the normal PSA level has come to be seen as ranging from 0 to 4. Some people with prostate cancer can have PSA levels in the hundreds or even thousands. After removal of the prostate, the PSA should become and remain zero; a rise from zero indicates the presence of malignant cancer cells either lying in the prostate bed or having spread to lymph nodes or other areas of the body. (Although the PSA has recently come to be seen as unreliable as a marker for new prostate cancers, it is virtually foolproof in following the course of prostate cancer after one's prostate has been removed).
The conventional wisdom at the time was for me to undergo immediate castration -- a more than terrifying prospect, especially for a psychiatrist like myself with some background in studying Freud. Testosterone fuels the growth of prostate cancer, just as estrogen can often fuel the growth of breast cancers. Thus castration makes perfect sense: Remove the source of testosterone, and the prostate cancer cells cannot continue to grow.
Except that prostate cancer cells, like any other living thing, have their own special survival skills: After they lose testosterone as a growth factor, they find some other substance in the body to fuel their growth. Once they can grow with or without the help of testosterone, the game is over. Prostate cancer wins; the human being loses.
In 1989, faced with the prospect of urologists' and cancer specialists' recommending a literal castration or, at the very least, a reversible chemical variety to stop testosterone production, I began my first efforts to poll a wider cadre of experts. I was desperately looking for some offbeat opinions that might protect my life and my testicles. In this foray, the crucial person I called was Gerald Murphy, who had, a few years earlier, developed the PSA test. Murphy, then based at the Centers for Disease Control in Atlanta, could not control a laugh as I poured out my terror about castration.
"Relax," he said between chuckles. "Go back to work; go back to helping people -- and get your mind off the PSA," which was then at 2.1. He noted that I could easily watch and wait, let the PSA get up to 8 or 10 over the next few years before taking any action. He also reminded me that in a few years some new breakthroughs in prostate cancer treatment might become available, that it paid to wait.
What wonderful and reasonable advice, from Mr. PSA himself! I was able to retain my testicles and, just as important, my sanity.
When, three years later, my PSA had risen to around 8, I knew I had to leap back into action. But instead of agreeing to castration as so many conventional medical experts were recommending, I went back to the wisdom of a larger group of medical experts.
