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.
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.
Suzanne Hoekstra, MD
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. 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.”
Dr. Hoekstra
She also points out that the study did not look at women aged 70 and older.
This is the population for 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.
Dr. Hoekstra
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 have numerous people in my family who have had breast cancer. I had been monitoring an area in my breast for 5+ years through MRI’s. I had two needle biopsies last September things changed in my mri and I has to have a core needle biopsy which just showed changing cells. I am not braca postiive. I decided to have a double mastectomy due to the fact that with my family history and my current diagnosis my chances of getting breast cancer was above 50%. I had my surgery at the beginning of May. A double mastectomy with reconstruction. They found that I did have dcis present. I am happy with my decision. I did make the choice of not taking tamoxifen after a conversation with my doctor and further research. My mother had dcis three years ago at the age of 72 and was told to have a double mastectomy and did take tamoxifen. My sister had breast cancer twice, once at the age of 30 and then in the other breast at the age of 35.
Hi my name is Winifred Mason, I just was diagnosed
with DCIS.
I have to see a genral surgeon, should I go to a breast clinic team to discuss other high risk health issues.
I begin doing my own research, I saw a team of Doctors
that was looking at a plan that would work for the patient.
I need some advice