Some doctors tell patients they have "stage zero" breast cancer. Others call it a precancer.
A less scary formal name could help, says a new report that urges removing the word "carcinoma" from the diagnosis of a common growth in milk ducts.
More than 50,000 women a year are diagnosed with DCIS, or ductal carcinoma in situ. This is not invasive breast cancer, the kind that kills. The abnormal cells haven't left the milk duct to penetrate breast tissue.
Still, it's removed because it is a risk factor for developing true invasive cancer later. Treatment works. Only about 2 percent of DCIS patients die of breast cancer in the next 10 years.
The problem: Doctors don't have a good way to tell which women are at risk of DCIS returning as true cancer and which aren't. So there are vast differences in how it's treated, from a simple small surgery to a full radiation-and-chemo blast. Some women even have the healthy opposite breast removed protectively.
It's time for major research to answer the risk question and determine who could safely skip harsh treatment and who really needs it, concluded specialists convened by the National Institutes of Health to assess DCIS.
And changing the name, the panel concluded, will help doctors convey that while this growth shouldn't be ignored, there's time to carefully consider the options.
"The name carries with it such a disproportionate level of anxiety relative to the relatively indolent nature of the disease," said Dr. Carmen Allegra, a University of Florida oncologist who chaired the panel.
The panel didn't offer an alternative name.
But the issue is similar to cervical cancer, where abnormal cells form on the surface of the cervix before eventually invading. What doctors now call a precancerous condition — and classify with various levels of severity — they once termed cervical carcinoma in situ.
With DCIS, "this is a complex area we know less about," said Dr. Susan Reed of Seattle's Fred Hutchinson Cancer Research Center. "We don't have a clear understanding of how to say, for example, 'Mrs. Jones, your risk to get an invasive breast cancer in the next 10 years would be' some percentage."