18 January 2003
seek 'the truth' on prostate treatments
Anne Barnard, Globe Staff
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.
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
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.
a result, many men, including some in the Beth Israel support group,
feel they were misled about the sexual side effects of their treatment.
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.''
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.
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.
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.
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.
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.
devastating,'' he said. ''We've had them coming in with tears in
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
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.
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.'''
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.''
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.
a man owns a penis,'' he said, ''we can make them have an erection.''
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.
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.
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.
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.
numbers, touted in Walsh's best-selling book, raised the bar for
prostate surgeons - unrealistically, say other surgeons.
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.
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.
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.
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.