Boston Globe
18 January 2003

Men seek 'the truth' on prostate treatments
By Anne Barnard, Globe Staff

At a robust 56, he faced surgery for prostate cancer, terrified that it would leave him impotent. He made the rounds, visiting top urologists at Harvard hospitals. He chose a surgeon who told him that 80 percent of his patients end up able to have sex without the help of devices.

Last week, unable to get an erection and suffering from incontinence, he went to a support group at Beth Israel Deaconess Medical Center, where he learned that the vast majority of the group have significant trouble with sexual function, even years after surgery or radiation treatment.

It turns out that the 80 percent success rate may be more hope than reality, achieved only by a few highly practiced surgeons on selected patients. One large-scale study of prostate cancer survivors found that, 18 months after treatment, 60 percent could not get an erection firm enough for intercourse.

As a result, many men, including some in the Beth Israel support group, feel they were misled about the sexual side effects of their treatment.

''Why can't we get good solid information?'' said the Boston man at Beth Israel, who, at four months after surgery, still hopes for improvement and did not want his name used for fear of alienating his doctor. ''If people knew the truth, if there was more - I hate to use the word honesty - but I think people could deal with this disease a little bit better.''

Doctors agree that there is a broad gap between the more optimistic potency rates widely quoted in surgeons' books and Web sites - especially those of celebrity specialists like Johns Hopkins Hospital 's Dr. Patrick C. Walsh - and the more typical experience. Published studies report post-surgical rates of impotence ranging from less than 15 percent to more than 80 percent, depending on the patients' ages and conditions and the experience of the surgeon.

Radiation treatment offers a somewhat lower risk of impotence, but, because long-term survival is not so good, doctors usually recommend surgery for younger patients, the ones most likely to be sexually active.

However, doctors say they tell patients up front about the risks and trade-offs. They also say that support groups overstate the degree of dissatisfaction because they tend to attract more men who are having problems.

But some doctors, as well as many patients, believe the prostate cancer survivors have a point: Surgeons sometimes downplay the chances of impotence as they focus on curing cancer. They sometimes quote potency rates for celebrity surgeons who do nothing but remove prostates, rather than their own rates, said Dr. Jeffrey Steinberg, acting chief of surgery at Cambridge Health Alliance, who advises the support group. Or they don't emphasize that the best numbers come from groups of younger, healthier patients.

The result, said group leader Stan Klein, is that with 180,000 men diagnosed and 55,000 undergoing prostate-removal surgery each year, thousands of survivors are glad to be alive, but painfully disappointed with their sexual function.

''It's devastating,'' he said. ''We've had them coming in with tears in their eyes.''

''I understand the frustration and anger on the part of many of those patients,'' Steinberg said, adding that doctors have to be extra rigorous in preparing patients for side effects, since men sometimes hear only what they want to hear when doctors predict their sexual future.

''It's important for surgeons to tell patients what their experience is in their own practice, how many they've done, what age range they've done'' he said. About 50 percent of his own patients are potent a year after surgery, he said, with better results in younger patients.

Klein, cancer-free nine years after surgery, is on a mission to paint what he calls a more realistic picture. His goal is not to discourage treatment: ''With almost 32,000 men dying each year, we don't want men to say, `I'll take my chances.'''

Rather, he said, realizing that impotence is more likely than not will prepare men better to cope with the problem and seek treatment - Viagra, injections, vaccum pumps and penile implants - that usually brings ''an almost normal sex life.''

Dr. Irwin Goldstein, director of the Institute of Sexual Medicine at Boston University School of Medicine, had this advice for prostate patients, whether they opt for surgery or radiation: Doctors exaggerate their ability to save your erections. Expect to be impotent. But worry only about surviving. Then, call the sexual dysfunction specialists.

''If a man owns a penis,'' he said, ''we can make them have an erection.''

Prostate cancer victims face a particularly difficult choice since the treatment options force them to decide between a greater risk of death or a greater risk of impotence. Unlike most cancers, their disease can be treated effectively with two very different techniques, surgery and radiation. While radiation causes less impotence and incontinence, surgery has better survival rates beyond 10 years. And radiation patients sometimes develop sexual side effects well after the treatment.

And for doctors, measuring safety and effectiveness of surgery is always contentious, since so much depends on individual skill and patient selection. There is some mistrust between surgeons and the epidemiologists and others who measure their outcomes. The debate over prostate surgery has even tapped into the rivalry between Boston's hospitals and Johns Hopkins of Baltimore - home of Walsh, the surgeon who helped raise expectations so high.

In 1981, Walsh published a paper describing the nerves that run close to the prostate and help control erections. He developed the technique of removing the walnut-sized gland without cutting either of the nerves, called bilateral nerve-sparing.

His most famous study, quoted frequently on his Web site, was published in 2000. Of 62 relatively young, healthy patients he operated on, 86 percent could have sex spontaneously after a year and 93 percent were completely continent. He and five other top surgeons also reported 90 percent potency on 50 patients under age 60.

Those numbers, touted in Walsh's best-selling book, raised the bar for prostate surgeons - unrealistically, say other surgeons.

''He's a very good surgeon and he's honest, but he's very selective'' in choosing patients, said Dr. Jerome Richie, chief of urology at Brigham and Women's Hospital, who says his own potency rate is 85 percent for patients in their 40s, 60 percent for those in their 60s.

In a larger study of 1,291 patients, about half over 65, University of Washington epidemiologist Janet Stanford found that 18 months after surgery, 60 percent of men reported having no erections or erections that were not adequate for sex. Even among those under 60, just 40 percent had erections adequate for intercourse.

Since not everyone can go to a top specialist, it's important for all surgeons to measure and report their own outcomes, said Dr. James Talcott, of Massachusetts General Hospital's Center for Outcomes Research. But he believes most don't - partly because the expectations are so high that real numbers would be damaging.

Talcott studied 49 patients who had surgeries at Boston teaching hospitals. He found that most were impotent, including 15 of 19 patients who had bilateral nerve-sparing surgery. He said his results were more realistic because the patients had a wider mix of ages and were asked about their conditions by independent researchers, not doctors.