October is filled with inspiring tales of breast cancer survivors and their stories of pain and determination. It’s a month when the country becomes so thoroughly pink ribboned that even the NFL sells pink merchandise and its players don pink cleats in vague awareness efforts—and, one hopes, a lot of money for cancer research.
And yet, while awareness of breast cancer is oversaturated, actual knowledge is decidedly less so. Most people women should get screenings on a regular basis. And the BRCA1 and BRCA2 gene mutations, along with CHEK2 and others that increase the risk of breast and ovarian cancers, have been a focus for several years now (more on that later).
But this story is on stage 0 breast cancer—a type that sounds like it should be either totally harmless (0 does equal nothing, after all) or the start of an apocalyptic epidemic, a la patient zero.
Turns out it’s neither. Stage 0 breast cancer is also known as ductal carcinoma in situ (DCIS), or a group of abnormal cells within the breast’s milk duct that, left untreated, can become invasive and spread to surrounding tissue as later-stage breast cancer. (There is also lobular carcinoma in situ, LCIS, which is growth of abnormal cells in the lobules, or milk-producing glands, of the breast. LCIS is not considered cancer, but may indicate an increased risk for breast cancer down the road.)
As with other forms of breast cancer, those most at risk for a stage 0 diagnosis are middle-aged women (the average diagnosis age for DCIS is 54) with a history of breast cancer. “The biggest risk factor for developing breast cancer—far and away—is previous history or family history,” says Dr. Neil B. Friedman, director of the Hoffberger Breast Center at Mercy Medical Center.
And those with the inherited gene mutations in BRCA1 or BRCA2, the tumor suppressor genes, have up to an 85% lifetime risk of a cancer diagnosis, Friedman says he tells his patients. (It was a mutation to her BRCA1 gene that led Angelina Jolie to get a preventative double mastectomy in 2013.)
According to the American Cancer Society, about 60,000 women are diagnosed with some form of carcinoma in situ annually, the vast majority (about 85 percent) with DCIS. Given that about 250,000 women a year are diagnosed with breast cancer, this would mean about one in five women with a breast cancer or breast cancer-related diagnosis comes from stage 0 (both DCIS and LCIS).
“[DCIS] is pretty common and primarily discovered via screenings,” says Dr. Katherine Tkaczuk, head of the breast evaluation and treatment program at the University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer. “It is managed as a cancer.”
This means, Tkaczuk goes on to explain, that when DCIS is diagnosed, it is treated as cancer, most often with surgery to remove the cells either via a lumpectomy or single or double mastectomy. Surgery may be followed with radiation or hormone-adjusting medication like tamoxifen, although those treatments vary from patient to patient and doctor to doctor.
There’s no way to give a one-size-fits-all treatment plan, Friedman says. “It really is a complex conversation with the patient on a number of factors.”
And if this all sounds fairly straightforward, that’s because it is—sort of. The long-term survival rate (10 years after diagnosis) is nearly 100 percent and while a stage 0 diagnosis comes with an increased risk of breast cancer down the road, the treatment of DCIS itself is very effective.
And yet, “the treatment is somewhat controversial,” Friedman says. “Some people argue that it’s not really a cancer.” And, therefore, it shouldn’t be treated as aggressively, and especially not with radiation unless necessary.
In line with the general trend of reducing overtreatment in medicine, there is a movement to take a more “active surveillance” approach to DCIS, giving patients drugs like tamoxifen and having them screened by mammogram every six months.
In fact, there is a clinical trial underway to test the effectiveness of this approach. It is one of the only new research undertakings when it comes to DCIS, since most time and effort goes into the more invasive cancers.
Until that data comes, though, both Tkaczuk and Friedman say surgery is the advisable route and the one most physicians take.
There’s no sure way to prevent or predict a cancer diagnosis, as too many families know from experience. But, in this case, knowledge can be power, and knowing family history is important. Outside of regular mammograms and screenings, it is reasonable for women to have a conversation with their gynecologist about what their risk might be, Friedman says, and to think about what, if any, next steps to take from there.