DCIS: Mostly good news

By Diana Zuckerman, Ph.D.

Thanks to widespread use of and technical improvements to screening mammography, there has been a dramatic increase in women diagnosed with ductal carcinoma in situ (DCIS), which is also called Stage 0 breast cancer.  DCIS accounts for 20-25% of new breast cancer cases diagnosed each year.¹ The National Cancer Institute no longer refers to DCIS as breast cancer.

It’s important for doctors to do a better job of explaining DCIS to patients, because the number of cases of DCIS has increased by 750% over the last two decades.  This has resulted in thousands of women being upset by a DCIS diagnosis that in many cases frightened them as much as a diagnosis of invasive breast cancer would have.

This epidemic is good news and bad news

The epidemic seems like good news because it means that a lesion that can cause breast cancer is being diagnosed very early, before it is life-threatening and before the radical treatments that women most dread (mastectomy and chemotherapy) are necessary. It is bad news because many women are not fully informed or do not clearly understand the difference between DCIS and invasive cancer, and as a result of their fear of cancer, many undergo mastectomies that are not medically necessary.

Standard treatment for DCIS is mastectomy or lumpectomy with radiation.  Sometimes patients also have hormonal treatment. In most cases, lumpectomy with radiation is as safe and effective as mastectomy or bilateral mastectomy.  And the latest research suggests that for most women, being treated for DCIS instead of waiting to be treated for breast cancer is not saving lives.²

A diagnosis of DCIS means that cancerous cells were found in the lining of the breast duct, and will not spread.  The fact that DCIS can’t spread means that it is not harmful to patients.  However, DCIS can change to Stage 1 breast cancer, which can spread and can be fatal. DCIS is much less dangerous than other breast cancers, but patients are frightened by a diagnosis of cancer, often resulting in over-treatment.

Is it necessary to have any kind of treatment for most types of DCIS?  Some women choose not to get any treatment.  That used to be considered risky because it was difficult to predict if DCIS would ever change to breast cancer or not.  However, as experts have learned to diagnose the most risky types of DCIS, experts in the field are now encouraging some women to consider not undergoing treatment, or considering hormonal treatment instead of surgery.

Although early detection of breast cancer can save lives, DCIS is not life-threatening the way  invasive breast cancer can be, and so the benefits of detecting it is controversial.

Unfortunately, many women diagnosed with DCIS undergo unnecessarily radical surgery and treatment. Over-treatment is expensive and can be harmful and debilitating to patients and their loved ones. And, when women diagnosed with DCIS undergo mastectomies just like women with later-stage breast cancer, it may discourage other women from having regular mammograms, since there seems to be no noticeable benefit to early diagnosis.

At a DCIS conference at the National Institutes of Health (NIH) in 2009, experts concluded that breast-conserving surgery is as safe and effective as mastectomy, although mastectomy is more likely to be recommended if the DCIS is in more than one location in the breast. Combining radiation therapy with lumpectomy helps prevent recurrence and the development of invasive breast cancer, and other hormonal treatment is sometimes used in combination with one of these surgical treatments. According to the NIH, the long-term disease-free survival of women treated for DCIS is between 96% and 98%. Despite the high survival rate, the NIH concluded that the “current diagnosis and treatment of DCIS have considerable emotional and physical impact for women diagnosed” making it important “for the medical community to consider eliminating the inclusion of the term ‘carcinoma’ in this disease, as DCIS is by definition not invasive—a classic hallmark of cancer.”

Research published in 2015 reported that the death rate for women with DCIS is very low – about 3% over the next 20 years after diagnosis, compared to about 1.5% for the general population of women.³ However, the risks are higher for black women with DCIS than for white women.

Low-income women with DCIS have been more likely to undergo mastectomy instead of breast-conserving surgery with radiation, compared to higher income women with the same diagnosis. One possible explanation for this is that mastectomy is less expensive than lumpectomy with radiation in the short-term. Treatment choices are often more influenced by the information a woman has about DCIS and her understanding or confusion regarding that information, rather than her actual diagnosis.⁴ Physicians’ recommendations are the most influential factor in a woman’s treatment choice.⁵

Tackling the DCIS Epidemic

The Cancer Prevention and Treatment Fund of the National Center for Health Research has worked on the forefront of patient education on this issue.  We have also educated health professionals through a popular continuing medical education course. Several years before the NIH Consensus Conference, we received federal grants to convene two conferences at NIH for experts to discuss the most effective treatment options for early-stage breast cancer and DCIS, as well as how to improve patients’ understanding of their treatment options. The result of these meetings was a patient booklet for women with several different types of early-stage breast cancer, developed by our Center in partnership with the National Cancer Institute and NIH, and the NIH Consensus Conference on DCIS.

With support from the Jacob and Hilda Blaustein Foundation, we developed a free patient booklet for women with DCIS.