The findings suggest there's a wide gap between what men withprostate cancer expect post-surgery and what actually happens -- and that many are shocked by the level of dysfunction after the operation.
After the surgeries, "we find that men are very disappointed and very sad. It's as if they really didn't hear what was being told to them," said study lead author Daniela Wittmann, a sexual health coordinator at the University of Michigan's prostate cancer survivorship program.
Removal of the prostate, a treatment for prostate cancer, is especially common among younger men, while older men often turn to radiation, said Dr. Stephen Freedland, an associate professor of urology and pathology at Duke University in Durham, N.C. The procedure can lead to urinary incontinence, sometimes to the point where men need to wear padding, as well as difficulty attaining and maintaining an erection.
Prostate cancer is also sometimes treated with hormonal therapy, which can also lead to impotence and other serious side effects, or by "watchful waiting," which means having regular exams while doctors keep an eye on the tumor to see if it grows or spreads. The latter is usually recommended when physicians feel someone's age will allow them to outlive the generally slow-moving cancer.
The study appears in the August issue of the Journal of Urology.
The problem is that the prostate is located right next to the urinary sphincter and nerves that contribute to erections, Freedland said. The operation to remove the prostate can disrupt those other parts of the body.
Competition among doctors may cause them to downplay the risks, Freedland said. "If one doctor says, 'Look, almost everybody I operate on leaks a little bit,' and the guy next door says, 'None of my patients leak,' one of them is telling the truth and the other isn't."
Compassion can be another factor preventing physicians from telling the entire story about risks. And patients themselves may be overly hopeful due to human nature, he said. "You're going to always have a mismatch between realities and expectations."
The new study tries to measure that gap. A total of 152 men undergoing radical prostatectomy (prostate removal) took part in the study. They received counseling about the surgery and were questioned before the operation and a year later.
The counselors talked to the patients for about 20 to 45 minutes with a focus on side effects, said study lead author Wittmann. That's more time than patients typically get with a urologist, she said.
A year after the surgery, 46 percent reported that urinary incontinence was worse than expected, while 44 percent said the same about sexual function. Most of the rest said their experiences in those areas were what they expected.
The researchers concluded that patients had "unrealistic expectations" despite the extensive counseling about side effects. They also discovered that a minority of the men (12 to 17 percent) expected to have better bladder control and improved erections after the surgery, which is the opposite of what usually occurs. Many more had thought that their bladder and sexual functioning post-surgery would at least remain the same, they noted.
Wittmann said the researchers plan to test another approach -- two-hour seminars for the patients and their partners about side effects, including tips men can use to try to alleviate them. "It includes the kinds of things that men can do to help themselves afterward," she said. "It's not just information on what you can expect, but what you can do."