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.
With one off-handed comment from Howard Sher at Memorial Sloan-Kettering Cancer Center in New York, I hit paydirt. He mentioned experiments being performed in Vancouver with "intermittent androgen withdrawal" -- a fancy name for a nine-month course of chemical castration followed by approximately two years of a perfectly normal life of normal levels of testosterone and normal levels of sexual activity. Although he did not personally recommend the treatment, since my cancer had the potential to be quite aggressive, he suggested that I might speak to Nick Bruchovsky, the cancer endocrinologist conducting the experiments.
Quickly arranging a family vacation to the Pacific Northwest, I met with some prostate cancer experts in Seattle and then spent a day with Bruchovsky. He said I was a perfect candidate for this experimental treatment, in that I had nothing to lose: The cancer cells would not readily develop their usual resistance to the treatment. These cancer cells would continue to have testosterone as a growth factor and would not need to find another substance in the body to be a new fuel for growth.
The treatment involves a temporary chemical castration utilizing two medications -- one of which blocks the production of testosterone in the testicles, the other of which blocks the production of testosterone in the adrenal glands. The experimental nature of this protocol rests in its brevity. Instead of my facing a permanent blockade of testosterone, this protocol lasts for only nine months at a time, followed by two years of normal testosterone levels.
His recommendation has proved to be objectively correct. Friends and colleagues who underwent permanent castration when facing a similar bind at the same time have all since died. And now Howard Sher at Sloan-Kettering and Celestia Higano in Seattle -- both prominent prostate cancer experts who questioned the wisdom of intermittent blockade at that time -- have become powerful advocates for its use.
Art vs. Science
But now I am faced with a new conundrum. Since cancers can become a bit funky after 20 years of circulating in one's body, some physicians recently recommended that I get a full body CT scan to make sure there are no visible signs of prostate cancer anywhere in my body. On this CT scan at the end of May, nothing showed up in lymph nodes or bone -- the most likely places for prostate cancer to spread. Sure enough, though, a lung nodule appeared in the center of my right upper lobe.
Radiologists and thoracic surgeons recommended an immediate biopsy and removal of the nodule even though the nodule is rather inaccessible. Not so fast, others said: If the nodule is a prostate metastasis, a messy and bloody field could seed the tumor throughout the lung, and the healing from surgery could unleash growth factors -- not unlike the factors involved in the regeneration of salamander limbs -- that allow the prostate cancer cells to generate further.
That's where things stood when a prominent lung specialist said to me, "Dealing with lung nodules is more an art than a science." That was all I needed to hear to leap into action and apply my modus operandi for dealing with choices in life-threatening situations.
In the two weeks after the nodule was discovered, I have talked with approximately 20 separate medical colleagues with varying levels of expertise and with a variety of specialties -- from my internist to pulmonologists, to surgeons, to radiation oncologists, to cancer endocrinologists, to simply medical-colleague friends, to fellow physicians who are dealing with cancer themselves. The ideas have come from as far afield as Dallas, St. Louis and Vancouver. The opinions have been independent, diverse and at times even eccentric -- yet always reflecting some significant expertise.
Many of my colleagues are convinced that the nodule is benign, nothing at all to worry about. Others think it likely to be a prostate metastasis. Still others worry that it could be a primary lung cancer -- unrelated to the prostate cancer. The nodule represents a Rohrshach test; the answers reflect every expert's different biases and projections.
Meanwhile, I am totally asymptomatic; I play tennis or basketball two to three times each week and I feel healthy. And I have come up with a plan.
Instead of an immediate biopsy, I have decided to re-initiate the androgen blockade that I discontinued two years ago. If the nodule shrinks in the next three months, most likely it is a prostate metastasis which can then be easily irradiated.
If it changes not at all in size, then it most probably is benign and can be watched by serial CT scans or X-rays.
If it continues to grow despite the hormonal withdrawal, an immediate biopsy is essential to rule out a primary tumor. This approach, it turned out, was best articulated by a radiation oncologist at Georgetown University. But when I described it to others who had mentioned other approaches, there seemed to be a consensus that this way of proceeding was eminently sensible.
The Best Judge
So, how does the wisdom of crowds ultimately help in this kind of decision-making?
Surowiecki, who writes "The Financial Page" for the New Yorker and is the author of "The Wisdom of Crowds: Why the Many Are Smarter Than the Few and How Collective Wisdom Shapes Business, Economies, Societies and Nations" (Doubleday), points out quite convincingly that a group of independent, diverse and decentralized experts comes up with the wisest decision more often than almost any one individual.
These diverse and independent views help to overcome the significant biases of each individual. As A.J. Liebling once pointed out, "Boxers box": Wind boxers up and they will continue to box until they die. Similarly, surgeons cut, radiation oncologists irradiate and cancer endocrinologists do hormonal treatments. At any one time, one of them will be perfectly correct, but not all the time.
Of critical importance, according to Surowiecki, is the availability of one person to aggregate the divergent opinions. Who can do it better than the person whose life is at stake? Over the 20 years of my dealing with prostate cancer, no one else could have taken into account more effectively than myself the relative desire and need for survival in conjunction with my overriding desire to retain my sexuality. Only I know the relative importance of each of these elements.
Obviously my knowledge and experience as a physician give me a special capacity as an aggregator of diverse opinions. Yet I would submit that one of the major roles of any primary care physician is to elicit as many independent viewpoints as possible on behalf of his patient whenever a medical problem calls for decision-making that is more art than science. Perhaps not so surprisingly, many apparently scientific decisions in medicine are more art than science.
Ultimately one of the wisest comments about my decision with the lung nodule came from a radiologist who was poised to do the needle biopsy, if and when I was ready for the procedure. She agreed that my approach was a reasonable one. The only limiting factor, she pointed out, was my ability to live with uncertainty and anxiety.
Yes, I replied, knowingly as a psychiatrist, it all comes back to the psyche.
We all may look for certainty in this world, we all may look to find that supreme expert who will have the wisest insights -- often not realizing that the wisest ideas come from a larger group with a wide variety of expertise, not from any single individual. In fact, the only other limiting factor in this quest for collective wisdom is shame and embarrassment about one's condition. As long as I feel no shame about my predicament, I am free to call as many friends and colleagues as I need to (and to write this kind of article). No decision I make, of course, is without some inherent risk. Yet I can live with the risks I am taking, knowing that I have the wisdom of a large, sage group behind me.
Paul Steinberg is the associate director of the Georgetown University Counseling and Psychiatric Service.