When it comes to prostate cancer, a new national survey shows, doctors and patients aren't talking about what might matter most -- what happens once the medical fight begins.
More than half of prostate cancer patients are blindsided by the hot flashes, altered bowel habits or weight changes that follow various types of treatments, but only a quarter of urologists realize they have left their patients in the dark, says the survey by New York City-based research firm, Roper Starch Worldwide.
That gap is even worse when it comes to less common side effects, such as breast enlargement or loss of muscle strength.
The survey also found that many prostate cancer patients say their physicians never told them about certain side effects. For example, only 18 percent of prostate cancer patients say their urologists told them about a side effect known as flare, which results from a surge in testosterone triggered by some hormone therapies. The surge can temporarily stimulate tumor cell growth, and may make the cancer worse before it makes it better.
Despite the fact that prostate cancer and its side effects can take an enormous psychological toll, almost 40 percent of the urologists surveyed say they never discuss emotional side effects with their patients.
And it seems even if they do discuss some of these issues, their message doesn't get through in many cases. While 43 percent of urologists say they discussed anxiety with their patients and 33 percent say they talked about depression, only 25 percent of patients say their doctor discussed either with them.
One of the problems may be that doctors believe their patients are getting information from other sources, specifically the Internet. The survey found 90 percent of doctors treating prostate cancer patients believe they get information from the Internet, while only 19 percent of the patients say that's where they went to learn about their disease.
The survey also revealed that many men who are at risk for prostate cancer might not be getting screened for the disease because they fear the side effects of treatment.
The survey was conducted earlier this year, and questions on prostate cancer awareness were asked of 151 men who were over 50 and 133 women married to men over 50. It also included in-depth interviews with 302 urologists and 307 men diagnosed with prostate cancer in the previous two years.
The study was presented at the annual meeting of the American Urological Association in May.
"I think most doctors realize they have to talk to people about potential side effects and complications," says Dr. Michael J. Manyak, professor and chairman of the urology department at George Washington University Medical Center, Washington D.C.
Sometimes patients don't hear what their urologists are telling them because they are shocked and focused on the news that they have cancer, Manyak says.
"So, if anything, I go out of my way to further cover those types of problems with them again so they really do understand what the story is, and I think most physicians act that way," Manyak says.
"I'm sure there are times when patients may not get the full story on something, and I don't think it's because of the doctor's unwillingness to talk about the side effects and complications," he says. "But they just don't convey the information as articulately as maybe someone else would."
Manyak says he has a set routine that he goes through with newly diagnosed prostate cancer patients, and that includes giving them reading material.
"There is serious cause for concern, and [the survey] does not surprise me. I haven't heard a prostate patient yet who didn't express a lack of communication somewhere along the line," says Henry Porterfield, chairman of US TOO! International, a 500-chapter prostate cancer advocacy and support organization based in Hinsdale, Ill.
But he stresses that doctors don't do it on purpose.
"It certainly isn't intentional. Doctors are not aware of it. In fact, sometimes patients aren't even aware of it until you ask them," Porterfield says.
He says patients are often stunned after hearing the diagnosis, and really don't know what to ask their doctor.
That's where support groups can play an important role. Newly diagnosed patients can talk with someone who's been through the ordeal and learn more about what they need to ask their doctors, Porterfield says.
What To Do
Prostate cancer is the second most common cancer and the second leading cause of cancer death in men. In the United States, 180,000 new cases of prostate cancer will be diagnosed this year, and 32,000 men will die of the disease. So, play it safe and make sure your doctor screens you if you are at risk.
By Robert Preidt
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