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What's the advice for men? The NIH panel said men with a PSA level less than 10 and a Gleason score that's 6 or less are candidates for this type of active surveillance. The Gleason score measures how aggressive prostate cancer cells look under the microscope. Urologists can provide those numbers.
Then what? Today, what men decide to do next largely depends on the advice of the specialist they wind up seeing, and many either don't offer active surveillance or present it in a negative way, as doing nothing, the NIH panel learned. There's also the patient's instinctive "get it out" reaction.
Enter the National Proactive Surveillance Network -- at http://www.npsn.net/ -- a collaboration of two large active-surveillance programs, at Johns Hopkins University and Cedars-Sinai Medical Center, with the Prostate Cancer Foundation. First, it aims to educate men about active surveillance.
Within a few months, an interactive section of the site will be added to link men with doctors who offer active surveillance and track how they fare with input straight from the patients themselves, said Hopkins' Dr. H. Ballentine Carter.
"To me, it's an individualized approach rather than the one-size-fits-all approach of treating everyone," Carter says.
Beyond whether and how men choose surveillance, behavioral scientist Kathryn Taylor of Georgetown University wants to know how they decide to stick with it. About a quarter of men abandon the observation approach within two or three years, and as many as half by five years, the NIH panel learned. It's not clear how much of that was because they needed treatment, and how much was just the anxiety or getting tired of repeat biopsies.
Taylor is beginning a study of 1,500 newly diagnosed, low-risk prostate cancer patients at Kaiser Permanente in Northern California to see how many are told about active surveillance and what helped or hindered their decision.
"Living with untreated cancer is very difficult," she says, "and not everybody can do it, not surprisingly."
[Associated
Press;
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