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Beyond The Headlines: DCIS. What's In A Name?

DCIS, ductal carcinoma in situ, is a real problem. Even though it's not cancer (most times it will never become cancer), it gets treated as though it is. Not good news for women.

In September 2009, the National Institutes of Health (NIH) brought experts together for a three-day conference on DCIS. They reviewed what is currently known about DCIS and the consensus they came to was: we know next to nothing about DCIS except how to find it. So they outlined areas in which more research is needed. (Click here to read the NIH Consensus statement.)

The 14-member conference panel included oncologists, radiologist, surgeons, pathologists, epidemiologists, biostatistics, nurses, obstetricians, public health analysts and social workers — but no patient advocates. At the conference, NBCC advocated for less use of MRI, a more evidence-based approach to using radiation therapy, and the renaming of DCIS. We recommend eliminating the word "carcinoma" and instead describing it more accurately, such as "atypical" (which means unusual) "hyperplasia" (which means proliferation of cells within the tissue).

Why does the name matter? Carcinoma means cancer, and cancer means mutations of cells that have spread. DCIS describes abnormal cells that have not spread, so the name is actually incorrect. And it creates a level of fear and anxiety that is unwarranted.

Of course, changing the name doesn't tell us anything new about how to treat it, but an accurate name could at least help women better understand the diagnosis. And recognize another risk associated with mammograms.
 

WHAT IS DCIS?

DCIS (ductal carcinoma in situ) is abnormal cells in the breast duct that have not spread and invaded other breast tissue. It's not cancer because it's not invasive. Sometimes DCIS will develop into invasive cancer, but we don't know which will. Women with DCIS are at increased risk for getting invasive breast cancer but we don't know how to quantify that risk.

Because we don't know, we treat DCIS the same way we treat invasive breast cancer. In most cases, treatments for DCIS include lumpectomy, lumpectomy and radiation therapy, mastectomy and sometimes even drugs such as tamoxifen. If DCIS is found in one breast, some women opt for a bilateral mastectomy, even though the data do not show that DCIS in one breast increases the risk of breast cancer in the other breast.
 
With increased mammography screening, the number of women diagnosed with DCIS has increased dramatically. Since most DCIS will never become invasive, we need to figure out which ones will and then which of those need treatment. Women with DCIS have an excellent survival rate (close to 100 percent), so figuring out who really needs treatment and which ones work best for which patient could spare many women unhelpful and potentially harmful treatments.