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Rethinking the word ‘cancer’ for women with early signs

Without a doubt, breast cancer is the disease women fear most and — with its potential to kill — for good reason. But oncologists who treat breast cancer find that even the tiniest, most curable growths provoke extreme anxiety in women simply because they’re called “cancer.”

For this reason, some say the diagnosis of such self-contained cancers, called ductal carcinoma in situ, should be renamed to lift the “big C” label.

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Researchers at Massachusetts General Hospital found that women are more likely to decide against aggressive treatments when told they have a “breast lesion” or “abnormal cells” instead of “noninvasive breast cancer.”

In the study published last Monday in the journal JAMA Internal Medicine, nearly 400 healthy women who saw doctors at Mass. General were surveyed on whether they would choose surgery or a less-invasive treatment if they were diagnosed with various breast abnormalities; they were told all posed the same risk of eventually turning into invasive cancer.

While about half of the women preferred to have surgery when they were told they had a “noninvasive cancer,” only one-third said they’d choose that option if they were diagnosed with a breast lesion or abnormal cells. The remainder said they would opt for preventive medications or active surveillance.

“I think this finding suggests that there’s a potential for overtreatment,” said study coauthor Elissa Ozanne, director of risk assessment and decision support at the University of California, San Francisco Medical Center, who previously worked at Mass. General. One solution might be to rename ductal carcinoma in situ or DCIS, she said, to take some of the fear out of the diagnosis.

Other cancer experts, however, aren’t certain that will be the case. Since the study didn’t include women who were actually diagnosed with DCIS, it’s tough to say whether they would change their treatment choices in the case of a real diagnosis, said Dr. Ann Partridge, director of the young women with breast cancer program at the Dana-Farber Cancer Institute. Still, she stressed that she’d be “open to trying” a name change.

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But even a calming of fears won’t likely change a woman’s course of treatment for ductal carcinoma in situ (DCIS) — at least until oncologists have enough evidence from research to tell women that they can be safely monitored without surgery. At this point, the recommended course of treatment is either a mastectomy to remove the entire breast — especially if there are many clusters of contained cancer cells — or a lumpectomy along with radiation to prevent a local recurrence in the breast.

Only a handful of oncologists offer the option of monitoring or using preventive medications, such as tamoxifen or raloxifene, outside of a research setting. “Electing not to surgically treat DCIS isn’t standard therapy right now,” Partridge said. “We overtreat it because we can’t determine for certain which lesions will become bad actors.”

Doctors can distinguish between more aggressive DCIS called “high-grade” or less aggressive cell types called “low-grade,” but while most low-grade growths never develop into invasive breast tumors, some will.

About a decade ago, researchers at Dana-Farber and Mass. General recruited 158 women with low-grade DCIS to participate in a study where they would be given lumpectomies to remove their lesions without any radiation and then monitored for up to five years; the study was stopped early after 12 percent of the women developed a recurrence of cancer cells; about two-thirds of these recurrences were DCIS and one-third were invasive tumors.

“The recurrence rate was deemed to be too high,” Partridge said, “but these were local recurrences that wouldn’t affect a woman’s chances of survival. It’s extremely rare for someone to develop a distant recurrence from DCIS since we assume they’re being watched.”

Just how frequently women with DCIS should be monitored with breast imaging and physical exams remains unknown since researchers have never studied the natural progression of in situ breast cancers to determine which ones are destined to become tumors and how quickly.

While watchful waiting might become a reasonable option for those with less aggressive DCIS, it may take more than a name change to entice women to choose it.

Deborah Kotz can be reached at dkotz@globe.com. Follow her on Twitter @debkotz2.

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