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The name given to a certain breast condition—ductal carcinoma in situ—contains a word almost everyone finds terrifying: carcinoma. At an NIH conference on the diagnosis and management of DCIS in 2009, a proposal was made to remove that word from the DCIS name in hopes of eliminating fear and stemming a trend of overtreatment. Though no action was taken, the name remains a point of contention among clinicians. The clue to the problem lies in the rest of the name: In situ, Latin for “in place,” implies that the abnormal cells are staying put—at least for the time being. Indeed, in perhaps 85 percent of cases, they do; the issue is identifying the remaining 15 percent that will go on to become invasive.
Barry Kramer director of the National Cancer Institute’s Division of Cancer Prevention, finds it worthy of discussion. “I don’t call it cancer,” he says. “When we call it carcinoma or stage zero cancer, that gives the wrong impression about its average behavior and what we do know about its biology. When you put a frightening term like cancer or carcinoma on a lesion that, on average, doesn’t go on to invade normal tissue, then that can prompt women who are justifiably frightened of the word cancer to have therapy that’s every bit as aggressive as if they had a true invasive cancer.”
But Paul Goss, director of breast cancer research at Massachusetts General Hospital, opposes the name change. “It’s stage zero, but it is cancer,” he says. And Seema Khan, a professor of breast surgery at Northwestern University in Chicago, argues that it’s not what the condition is called that raises difficult issues, but rather the uncertainty about how to manage treatment. Until the standard therapy shifts, she says, removing cancer from the DCIS name would only increase confusion. She asks her patients to refer to DCIS by its acronym and encourages them to take the time to explain to friends and family that it’s an abnormality that doesn’t spread or cause death. “If they internalize that distinction, it will defuse the weight of the word cancer. Until we find a better label that captures the variation of DCIS and is consistent with the treatment, I’m not sure it matters all that much whether it has the word cancer in it or not.”