Stage 0 Breast Cancer (DCIS). Does it need to be treated?

Lauren, Diane and Elizabeth

Me and my nurses Lauren and Elizabeth. September 2014

I am one of 60,000 women in the United States diagnosed every year with Stage 0 breast cancer. At that stage, the cancerous cells are confined to the insides of a milk duct and are not considered dangerous. The question is, what are the chances the cells will break through the walls of the duct and invade other tissues. Currently, there is no foolproof way to predict.

DCIS study

As you might imagine, I was quite interested in a study just published in JAMA Oncology that looked at death rates associated with stage 0 breast cancer, which is also known as DCIS or ductal carcinoma in situ.

The goals of the study were to estimate death rates 10 and 20 years after a DCIS diagnosis and to see if age at diagnosis, ethnicity and initial treatment played a role in those death rates.

Study results

The researchers followed 100,000 women diagnosed with DCIS for 20 years. All of the women had undergone some form of treatment.

The results:

  • Women diagnosed with DCIS had a 1.8 times greater risk of dying of breast cancer than women in the general population (United States).
  • Certain characteristics increased the risk of dying:
    • Younger than 35 when diagnosed with DCIS (7.8% vs. 3.2%)
    • Higher in black women than in white women (7% vs. 3%)
  • Having a mastectomy or radiation therapy to prevent an invasive breast cancer recurrence did not prevent death from breast cancer.
  • The clinical course of DCIS was similar to the course of small invasive (cells have spread beyond the walls of the duct) breast cancers.

I asked my own breast cancer specialist, Dr. Suzanne Hoekstra at Breast Care Specialists of Maine what she thought of the study. She replied, “While this study does point out some interesting facts, it only studies women who were actually treated for their DCIS.  Thus, it is difficult to extrapolate this data into comments [being made] that women should not be treated for DCIS.”

Deciding what to do

When I was diagnosed almost exactly one year ago, I did a lot of research and asked a lot of questions as I tried to figure out my risk. I read about other women with DCIS who opted for a mastectomy, sometimes double mastectomies and reconstructive surgery. I read about women who had lumpectomies followed by a course of radiation therapy and sometimes five years of tamoxifen if their abnormal cells were estrogen positive. I read about a few women who had lumpectomies and that’s all and I read about even fewer women who decided to simply watch and wait.

I considered the kinds of questions I should be asking. In particular, I wanted to understand the risks and benefits of everything that was being offered to me. I got second and sometimes third opinions.

In the end, I chose a lumpectomy. If I were younger (I’m in my 60s), maybe I would have chosen a mastectomy. I don’t know. The path report came back showing a tiny spot of cancerous cells and wide margins of normal tissue. I decided that I’d rather hold off on radiation therapy — which has its side effects — in case I really needed it someday. My cells were slightly positive for estrogen, but again, after considering it carefully, I decided that Tamoxifen offered me more risks than benefits. I consulted with several experts, including Dr. Hoekstra and they all agreed.

Dr. Hoekstra believes that it’s important to consider how patients feel about their diagnoses. “Many women are not willing to watch over their DCIS over time to determine if it is developing into a more serious invasive cancer requiring treatment,” she says. “In many women, DCIS behaves like other breast cancers and should be treated, but it is difficult to know which DCIS cases will be the more aggressive ones and should be treated, even with technologies such as Oncotype DX.

She also points out that the study did not look at women aged 70 and older. “This is the population in whom the question of omitting treatment or reducing treatment is the most relevant because they have competing medical issues that often trump their breast cancer mortality.”

What now?

In my opinion, this study doesn’t answer any questions, it simply raises more, which is not necessarily a bad thing. It also drives home the point that if you’re told you have DCIS you shouldn’t accept the first piece of advice that you’re given. It usually isn’t an emergency situation, so you have time to think it through and make a decision based on facts, not fear.

What needs to happen, says Dr. Hoekstra, is a randomized study of women with DCIS who undergo treatment versus those who do not. Then we might know which patients will derive the most benefit from their treatment. She does not plan to change her current practice based on this recent study. “I will continue to discuss options with patients and help them individualize their own treatment plan.”

And I will continue to hope that I made the right decisions. So far, everything looks good.

I would like to write another blog post about what women (and men, although DCIS is extremely rare in men) have decided to do after being diagnosed and how they feel about it now. Have you been diagnosed with DCIS? Or someone close to you? Will you share your personal experiences with me? You can either leave a comment below or send me an email. Thank you!

Diane Atwood

About Diane Atwood

For more than 20 years, Diane was the health reporter on WCSH 6. Before that, a radiation therapist at Maine Medical Center and after, Manager of Marketing/PR at Mercy Hospital. Now she writes the award-winning blog Catching Health with Diane Atwood.