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PCa patients blindsided by side-effects

May 1,2000

ATLANTA, GA -- May 1, 2000 -- A large percent of urologists treating men with prostate cancer are not aware that their patients are experiencing such disturbing side effects as hot flashes, altered bowel habits (diarrhea or constipation) or weight changes from various cancer treatments, according to the results of a national survey announced during the 95th annual meeting of the American Urological Association (AUA).

While more than half of patients (52 percent) experience one or more of these side effects, the survey by Roper Starch Worldwide found that only a quarter (25 percent) of treating urologists are aware that their patients have any one of these difficulties during treatment.

And when it comes to less common, but at times psychologically devastating side effects, the disconnect between patients and physicians is even greater: patients are three to four times more likely than their doctors think they are to be suffering from breast enlargement (gynecomastia) or loss of muscle strength.

"Fighting prostate cancer is tough, and a key to winning the treatment battle is communication between patient and doctor," said New York Yankees Manager Joe Torre, a prostate cancer survivor who served as an advisor to the survey. "Patients need to tell doctors about treatment issues, and doctors should cover the full range of side effects so that no one is surprised."

To help close these gaps in physician-patient communication, an innovative program called "Managing Success: Rethinking Prostate Cancer Care and Survival" is in development and will be launched this fall. An alliance of prominent medical urologists and oncologists, US TOO International (a prostate cancer advocacy and support organization), the American Foundation of Urologic Disease and Torre, will shape the program supported by Amgen and Praecis Pharmaceuticals.

Prostate cancer patients also report that their physicians have never told them about certain side effects. For example, only 18 percent of prostate cancer patients say their urologists told them about a potential side effect known as "flare" - a condition resulting from a surge in testosterone triggered by some current hormone therapies. The testosterone surge can temporarily stimulate tumor cell growth potentially worsening the cancer before therapies take effect.

"Discussion of side effects differs depending on the stage of the disease," said Colonel David G. McLeod, M.D., program director and director, Urologic Oncology, Walter Reed Army Medical Center. "If it's a patient with late stage disease, for example, physicians are more likely to talk about flare."

Even though prostate cancer and its side effects can take an enormous psychological toll on patients, almost 40 percent of urologists surveyed say they never discuss emotional effects of treatment with patients. Doctors who do report discussing emotional side effects may not be getting through. While only about one-fourth of patients say their doctor discussed anxiety or depression with them, 43 percent of urologists say they discussed anxiety with their patients and 33 percent say they discussed depression.

"It is important that physicians make sure that patients understand all of the repercussions of prostate cancer treatments, as this information may not sink in when they are initially diagnosed," said Dr. McLeod.

Even in this Internet age, patients say their physician is still the main source of information. Yet while almost 90 percent of doctors treating prostate cancer patients believe their patients are getting information from the Internet, the survey showed only 19 percent of prostate cancer patients are going online for more information about their disease.

Men also do not appear to take advantage of prostate cancer support groups, which can provide emotional support and information to patients. Nearly 40 percent of urologists say they encourage patients to attend support groups, but only 12 percent of patients say they attend.

Finally, the survey results indicate that men at-risk for prostate cancer (age 50 and older) may be running scared from the disease. Seventy-four percent of these men believe that fear of side effects could stop other men from being screened, but only 9 percent of men admitted it could stop them. And, one in five men who aren't being screened annually acknowledge that their avoidance is due to fear - both of side effects of treatment or of learning that they have cancer. Women married to men in this at-risk age group consider fear an even greater factor - nearly one in three wives say that these fears are responsible for their husbands' inaction.

"Screening is critical, as prostate cancer is treatable if detected early," Torre said. "Men shouldn't let the limitations of existing prostate cancer treatments stop them, as researchers are investigating other factors that may be involved in prostate cancer and working to develop better therapies."

Prostate cancer is the most common cancer (excluding skin cancer) and the second leading cause of cancer death in men. More than 180,000 new cases of prostate cancer will be diagnosed in the United States this year, and nearly 32,000 men will die of the disease.

The first part of this survey was a national probability sample of 1,010 adults conducted during March 16-19, 2000. From this sample, questions on prostate cancer awareness were administered to 151 men age 50 and older, and 133 women who are married to men age 50 and older by telephone. The findings are projectable to each population with a margin of sampling error +/- 8 percentage points. The other two parts of the survey consist of in-depth telephone interviews with a random cross-section of 302 urologists and 307 men who were diagnosed with prostate cancer in the last 24 months. The findings are projectable to each population with a margin of sampling error +/- 6 percentage points. Interviewing was conducted during March 14-April 4, 2000.


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