Study: All DCIS is not the same: Young women and African American women at higher risk after DCIS diagnosis

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Women diagnosed with DCIS

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Checked Breast cancer survivors

Checked Women under 45

Checked Women over 45

Checked Special populations: African American Women, People with DCIS

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Diagnoses of ductal carcinoma in situ (DCIS), sometimes called stage 0 breast cancer, have increased in recent decades. Many people with DCIS wonder if they need aggressive treatment. A study looking at the survival of over 100,000 women found that breast cancer mortality after DCIS is low (3%), and identified groups of women who are at higher risk after DCIS. (9/8/15)


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Questions for your doctor Resources and references


This study is about:

Estimating breast cancer mortality after a DCIS diagnosis and identifying which factors, such as age, ethnicity, and initial treatment received, increase a DCIS patient’s risk of dying from breast cancer.

Why is this study important?

The study agrees with previous work that shows a low death rate from breast cancer after DCIS diagnosis.  The study found a 3.3% risk of death from breast cancer after 20 years beyond a DCIS diagnosis. Finding common factors in women with DCIS who eventually died from breast cancer can help physicians learn who might benefit from more aggressive treatment, which will translate into helping patients and their doctors decide on the best course of treatment. 

Study finding(s):  

  1. The risk of dying from breast cancer 20 years after a DCIS diagnosis is low: 3.3% for all women.
  2. Women under age 35 at DCIS diagnosis and black women had the highest risk of death from breast cancer after 20 years (approximately 8% and 7%, respectively).
  3. Treatment with radiotherapy or mastectomy did not decrease breast cancer mortality. 

What does this mean for me?

The study showed that the risk of dying from breast cancer after a DCIS diagnosis is generally low, and it opens the possibility of discussing less aggressive treatment alternatives with patients’ health care providers. However, the study identified two groups of women with higher breast cancer mortality after DCIS—young women who are diagnosed with breast cancer (under 40 years old) and African American women who are at higher risk of dying from breast cancer. It is important for women in these two groups to discuss DCIS treatment options and heightened surveillance with their health care providers.

Expert Guidelines

The National Comprehensive Cancer Network (NCCN) is an organization of top cancer experts who create national guidelines on cancer prevention, detection, treatment and genetics. NCCN has a guide for patients on DCIS, which includes:

  • Breast-conserving therapy (lumpectomy followed by radiation therapy) without lymph node surgery.
  • Total mastectomy with or without lymph node surgery.
  • Breast-conserving surgery without lymph node surgery followed by accelerated partial breast irradiation.
  • Breast-conserving surgery without lymph node surgery (and without radiation therapy).   

Following surgery, the NCCN recommends that patients:

  • Consider endocrine (hormonal) therapy for 5 years.
  • Receive counseling regarding risk reduction.


Questions To Ask Your Health Care Provider

  • What are the best options for treating my DCIS given my age and/or family background?
  • Will my family history of cancer affect my treatment options for DCIS?
  • What other tests can be used to help decide how to treat my DCIS?
  • I was diagnosed with DCIS before age 50, ­ should I consider genetic counseling or testing?
  • What are my options for preventing a recurrence?

Open Clinical Trials



Study background:

Although DCIS cells are abnormal, they are not the same as invasive cancer cells. Unlike invasive cancer, DCIS lacks the ability to metastasize (spread to other areas of the body). Scientists long believed that untreated DCIS cells could turn into invasive cancer, which might then spread to other parts of the body and cause death.  For this reason, DCIS lesions are generally removed and the remaining breast is treated with radiation to kill off any lingering cancer cells.  However, data from previous studies and this more recent study show that even left untreated, DCIS seldom leads to death, and that removing DCIS does not help most women live longer.  This study was done to learn which risk factors are associated with breast cancer mortality after a DCIS diagnosis.

Researchers of this study wanted to know:

How many women previously diagnosed with DCIS eventually die from breast cancer, and which women are at greatest risk for breast cancer death after DCIS.

Population(s) looked at in the study:

Data from approximately 108,000 women who were diagnosed with DCIS from 1988-2011 were obtained from the National Cancer Institute’s SEER (Surveillance, Epidemiology and End Results) database. SEER collects information on all patients diagnosed with cancer, including the site of the primary cancer; the stage of cancer at diagnosis, the first course of treatment; specific markers, such as HER2, ER, and PR; and patient survival.  Research using databases such as SEER is useful in designing controlled studies that compare how different treatment options affect survival.

Study results:

  • 20 years after DCIS diagnosis, the breast cancer mortality rate was approximately 3% for all women.
  • Women who were diagnosed with DCIS before age 35 had the highest risk of death from breast cancer after 20 years. The 20-year risk was still low (approximately 8%).
    • Women who were diagnosed with DCIS between ages 35-39 had a 4.5% risk of developing invasive breast cancer after 20 years.
    • On average, women who were diagnosed with DCIS between ages 40 and 69 had an approximate 3% risk of developing invasive breast cancer after 20 years.
  • African American women had a 7% risk of death at 20 years after DCIS diagnosis, compared to 3% for white, non-Hispanic women.
  • Radiotherapy after lumpectomy reduced the risk of developing an invasive recurrent breast cancer from about 5% to 2.5%. However, this reduction did not translate to a reduction in risk of death from breast cancer.
  • Of the 956 women who died of breast cancer (out of 108,196 women total) after their DCIS diagnosis, most (approximately 55% of the 956 women) did not have a record of invasive in-breast recurrence.


Researchers were unable to tell which cases of DCIS were detected through screening and which cases were symptomatic. The researchers did not have access to information that could affect risk of recurrence and/or second primary breast cancer such as:

  • tamoxifen use after DCIS
  • body mass index
  • family history of breast cancer
  • the presence of mutations in BRCA or other genes associated with increased cancer risk
  • whether or not the later invasive cancer was a recurrence of the original cancer or a new breast cancer in the same or opposite breast


This study highlights two populations who have a higher risk of breast cancer mortality after DCIS diagnosis: young women (under 40) and African American women. As breast surgeon Dr. Laura Esserman said in an editorial that was published on this study, “For young women (<40 years) who present with symptomatic DCIS—approximately 5% of the population—we should be cognizant that this is a different disease than typical DCIS.” Esserman noted that new tests that look at a patient’s tumor can help health care providers identify which patients with DCIS could benefit from more aggressive treatment.

This study did not look at patients’ BRCA status or their family history of breast cancer. While the study shows that the risk of dying from breast cancer after a DCIS diagnosis is generally low, young women and African American women should be monitored more regularly and more thoroughly.  Women diagnosed with DCIS before the age of 50 meet national guidelines for referral to genetic services; they may wish to discuss the possibility of genetic counseling and/or testing with their health care provider.

Experts note that this study alone does not mean that doctors should stop treating women with DCIS; rather, it is an indicator for further discussion and research on how to best treat DCIS in different populations.

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