STILL WAITING, WATCHFULLY A FORMER FORTUNE WRITER WHOSE UNORTHODOX CHOICE IN FACING PROSTATE CANCER CAPTIVATED READERS REPORTS ON HIS PROGRESS.
By TOM ALEXANDER REPORTER ASSOCIATE BETHANY MCLEAN

(FORTUNE Magazine) – I get a lot of calls and letters nowadays from people wondering, I suspect, whether I'm dead yet. In September 1993, I wrote an article for FORTUNE chronicling my prostate cancer diagnosis and my struggle to decide what to do about it. In brief, it appeared that I had a relatively small tumor and that my options were surgery or radiation. My urologist estimated the odds of a successful cure at about 95% for surgery and 75% to 85% for radiation, and also warned that if I didn't do something, chances were 40% that the tumor would metastasize within five years and thereafter be incurable.

In subsequent second opinions and my own research, I discovered growing controversy about these numbers, including some evidence that the doctor may have overstated the prospects of success and understated the likelihood of untoward consequences of these accepted treatments. According to some surveys of patients who'd had radical prostatectomies, about 50% became incontinent and 88% experienced impotence. As I wound my way through the contradictory medical literature and interviewed experts, I became aware that, in fact, there was dispute over whether any of the known treatments was likely to prolong my life or, if it did, whether the prospective few weeks or months that might be added to the end of my life would outweigh the potential damage to life's quality, starting now.

With some initially hesitant support from a bright young urologist, Jonathan Jarow, at Bowman Gray Medical Center in Winston-Salem, North Carolina, I decided on watchful waiting, which amounts to doing nothing except monitoring my disease. What I didn't know at the time was that I was joining an enormous cohort of scared and bewildered men whose long-unsuspected tumors had only then been uncovered by the powerful new blood test for "prostate specific antigen," or PSA. As soon as my article appeared, I began receiving letters and phone calls from other newly diagnosed men. Since no information had been given about where I lived, except for a vague reference in the article to "western North Carolina," they had exerted ingenuity to locate my address or phone number (the number is 704-926-9572).

Early on, from what I was hearing, most urologists were strongly urging immediate surgery on my callers and correspondents--no matter what their situation. I suspect that the majority of men in my situation do get treatment. Many indicate that they're under strong pressure not only from their doctors but from their wives and families to get that stuff out of there. I count myself lucky in having a wife, Jane, who has never questioned my decision and in having a doctor, Jarow, who often seems even more skeptical of treatment than I.

Though trained in radical prostatectomy at Johns Hopkins by Patrick Walsh, who is widely regarded as the best in the business, Jarow contends that the men most likely to be cured--those with the small, low-grade tumors that surgeons like and that PSA tests now pick up in abundance--may not need curing since they'll probably live to die of something else. On the other hand, he says, men who most need to be cured--those with large, advanced tumors--probably can't be cured, since their cancer is likely already out of the barn.

Since I wrote the article, it appears that more doctors currently accept watchful waiting as a legitimate option in the case of small, low- to moderate-grade prostate tumors, even in "young" men such as myself (I'm 65). A team from the Mayo Clinic, for example, has defined as "clinically insignificant" most prostate tumors unlikely to grow larger than 20 cubic centimeters in the projected lifetime of the patient.

My waiting strategy relies on PSA as a surrogate for changes in tumor volume and malignancy, which in turn are supposed to warn when my cancer may start to grow rapidly. A normal PSA is usually considered anything below 4 nanograms per milliliter of blood. At diagnosis my level was 5.9, but it has since soared as high as 10.9, possibly because of an infection, and dipped as low as 5.8. Besides PSA fluctuations, another difficulty, which Jarow is careful to point out, is that by the time we've seen a PSA move convincing enough to act upon, it may be too late.

I still keep treatment as a fallback in case things look as if they're turning sour. For the moment, though, I have no symptoms and I find living with prostate cancer gets easier all the time. The actual mortality and even the relative risk are, after all, not very different from auto fatalities, but who hesitates to jump into a car for a movie? I probably wouldn't even think much about prostate cancer were it not for those calls and letters. Meanwhile, I hope for ten or 15 years untroubled by the negative effects of either cancer or its treatments, during which time maybe some of the promising current research on genes and immunity may finally pay off with real answers to this weird disease of ours.

Reporter Associate Bethany McLean