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WHAT'S IN A NAME?
A ductal carcinoma in situ diagnosis can spur premature action // Should it be called cancer? // A new name might mean a different approach // Because what if it’s nothing?

No Easy Answers

By Christie Aschwanden // Winter 2014
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© Yvette Blumenfeld Georges Deeton, Courtesy Art + Commerce

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% of cases, they do; the issue is identifying the remaining 15% 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.”

Shelley Hwang, professor of surgery at Duke University in Durham, N.C., meanwhile, has found that words do make a difference: When she and her colleagues presented nearly 400 healthy women with fictitious DCIS scenarios and three treatment options—surgery, medication or watchful waiting—47% of them chose surgery when DCIS was described as a “noninvasive breast cancer.” But when the description was changed to “abnormal cells,” fewer than a third of the women said they’d opt to have the lesion removed.

It’s a scenario that’s becoming more common. A generation ago, an oncologist might have gone years without encountering DCIS. In the 1970s, DCIS represented fewer than 2% of breast cancer diagnoses, and the condition was usually discovered only after a breast lump, discharge or other symptom raised the alarm. But widespread mammography, able to detect smaller and smaller lesions, has led to a sevenfold increase in the number of new cases of DCIS. Today it accounts for about one in five breast cancer diagnoses, with some 64,000 women diagnosed with the condition last year.

That surge presents a quandary for physicians—and for their patients—because screening’s ability to find these precancerous lesions has outstripped knowledge about how to classify DCIS and how to treat it, says Khan. “We’re probably finding some DCIS lesions we don’t need to find, and then we’re faced with the conundrum of what to do,” she says.

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1. Final Panel Statement from the NIH State-of-the-Science Conference: Diagnosis and Management of Ductal Carcinoma in Situ (DCIS), held Sept. 22-24, 2009, in Bethesda. Summarizes the current evidence and questions regarding DCIS diagnosis and treatment.

2. “Overdiagnosis and Overtreatment in Cancer: An Opportunity for Improvement,” by Laura J. Esserman, Ian M. Thompson Jr. and Brian Reid, JAMA, Aug. 28, 2013. An editorial arguing that the word cancer should be removed from the DCIS name.

3. “Communication Between Patients and Providers and Informed Decision Making,” by Joann G. Elmore, Pamela S. Ganschow and Berta M. Geller, Journal of the National Cancer Institute Monographs, 2010. An examination of why informed decision making is difficult to carry out in cases of DCIS and suggestions for ways to communicate information about the diagnosis and treatment of DCIS.

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