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Understanding Risk of DCIS

Posted 5/1/2013

Posted in

  Whatever the specifics of a breast cancer diagnosis, women worry. Of course we may worry a little more or a litte less depending on the statistics we hear or some of the details of the pathology, but we generally understand that no one gets a guarantee and that we are each an "n" of one. It has always interested me that this is equally true for women who are diagnosed with DCIS (or LCIS) which is generally described as "Stage 0". In fact, some doctors say that DCIS is not cancer, that it is something that might become cancer in the future if not treated. And the real kicker there is that many DCISs (is that the plural?) would never become invasive, but that we don't know how to tell those sleeper ones from the potentially dangerous ones.

  In spite of this reassurance, women with DCIS usually worry like the rest of us. Some, in fact, opt for bilateral mastectomies in the absence of any medical reason to make that choice. This is an article from The Oncologist about women's risk perception as related to DCIS. As you would suspect from my comments, most women with this diagnosis greatly exaggerate the possibility of future trouble. Please do not misunderstand: In no way am I minimizing the angst associated with DCIS and its treatment. I am wishing, however, that women could more easily understand that, once treated, they really don't need to worry.

  Here is the abstract and a link to read more:

Long-Term Risk Perceptions of Women With Ductal Carcinoma In Situ.


Medical Oncology.



Previous research has demonstrated that many women with ductal carcinoma in situ (DCIS) overestimate their risk for future breast cancer at the time of diagnosis and soon thereafter. This study aims to evaluate risk perceptions after 5 years.


In a longitudinal cohort study, we mailed long-term follow-up surveys to 315 women who had previously responded to a survey 18 months after they were diagnosed with DCIS, excluding those who had experienced recurrence and those not treated at our institution. We evaluated risk perceptions with items used previously in the cohort.


One hundred ninety-three women (61%) responded. The median time since diagnosis was 5.9 years. We excluded 12 because of recurrence. Of the 181 remaining, 32% perceived at least a moderate 5-year risk for developing DCIS again, 43% perceived at least a moderate lifetime risk for developing DCIS again, 27% perceived at least a moderate 5-year risk for invasive breast cancer, 38% perceived at least a moderate lifetime risk for invasive breast cancer, and 24% perceived at least a moderate risk for DCIS spreading to other body parts. In a multivariate model, worse financial status and higher perceived risk in the previous survey were the only predictors of at least a moderate perception of risk for DCIS spreading.


Women with a history of DCIS continue to harbor inaccurate perceptions of their risk for future breast cancer events even 5 years after diagnosis.



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