Ductal carcinoma in situ (DCIS) is a condition in which a spectrum of abnormal cells are found in the breast duct and have not spread outside the duct to other tissues in the breast. Since the advent of widespread screening mammography in the early to mid 1980's, rates of DCIS have increased sharply. It is estimated that more than one million U.S. women will be living with a prior diagnosis of DCIS by 2020.
The panel convened by the National Institutes of Health (NIH) said that DCIS, the most common non-invasive lesion of the breast, presents unique challenges for patients and providers largely because the natural course of the untreated disease is not well understood. Because most women diagnosed with DCIS are treated, it is difficult to determine the comparative benefits of different treatment strategies versus active surveillance, meaning systematic follow-up.
Hence the panel urged the scientific community to identify appropriate biomarkers and other prognostic factors to better predict the risk of developing breast cancer.
"Instead of treating all women diagnosed with DCIS, we need to determine which individuals are likely to develop invasive breast cancer and which will not," said Dr. Carmen Allegra, panel chair and Chief of Hematology and Oncology at the University of Florida. "If we could accurately predict this, we might save some women from undergoing unnecessary invasive treatments while achieving the same positive outcomes."
Despite the connotations associated with the term carcinoma, survival rates are bright in DCIS, when it is treated with currently available therapies. These include breast-conserving surgery (local excision, with or without radiation), removal of the breast (mastectomy), and/or tamoxifen. It is important to stress that each of these treatment options has physical and emotional impacts to patients and should be weighed accordingly. The panel recognized that there are relatively few reliable data on the comparative effectiveness of both diagnostic and therapeutic options in DCIS.
To improve the understanding of this complex disease, the panel recommended efforts to ensure detailed collection of clinical, pathological, imaging, and molecular data about DCIS using standardized reporting measures, annotated specimen repositories, and multicenter databases.
Also changing the name, the panel concludes in its report, will help doctors convey that while the duct growths should not be ignored, there is 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 Carmen Allegra, a University of Florida oncologist who chaired the panel.
The panel did not 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."
The panel emphasized the importance of patient preferences and recommended improved communication between patients and providers, and serious consideration of new nomenclature that more closely reflects the excellent survival rates for this condition.
Efforts to improve communication would also include further development of formal decision aids. Such tools would reduce misinformation and improve understanding of a DCIS diagnosis and the risks and benefits of various treatment options. Individuals who have DCIS should have access to the best possible information and guidance to aid them in making care decisions that reflect their unique circumstances, perspectives, and preferences.
The National Institutes of Health (NIH) — The Nation's Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases.