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What's in a Name?: Dec 15, 2011

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At the Patient POV blog, Laura Newman reports on a "bombshell" that came out of the National Institutes of Health Consensus Development meeting last week. At a session on the active surveillance of prostate cancer, the panel suggested that men who have PSA screening results of 10 nanograms or less and a Gleason score of six or less shouldn't be told that they have cancer. These patients are candidates for active monitoring of their disease, the panel added, and calling their condition 'cancer' sets off too many emotional alarms.

But even proponents of active surveillance tell Newman they'd have a hard time abandoning the word 'cancer' — they'd rather call it a "very slowly progressing cancer." Further, some doctors don't even believe in active surveillance for prostate cancer in the first place, making a terminology change useless, Newman adds.

At the Knight Science Journalism Tracker blog, Paul Raeburn wonders, "If they don't have cancer, what exactly do they have?" The panel didn't say which word or term should replace 'cancer' for this specific patient group, and instead left it up to pathologists and urologists to sort out. That's "a cop-out," Raeburn says. "If pathologists and urologists decide what language to use, it's likely to be some orthographic monster derived from classical Greek."

In the end, Raeburn says, the issue is less about the terminology and more about what it represents. "People with cancer need treatment; people without it don't," he says. If the disease isn't called 'prostate cancer,' it might be easier to convince doctors that these patients should be on 'active surveillance' rather than undergoing aggressive treatment. If that's the real goal, Raeburn says, the solution isn't a terminology change, but a change in how prostate surgery is paid for. "Prostate surgery is very lucrative; active surveillance is not," he says. "Maybe doctors need a wake-up call. Maybe they can find a way to make a living, without throwing radiation or the knife at every patient with a prostate alert."

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