LAUSR

Approximately 50,000 women are diagnosed with ductal carcinoma in situ (DCIS) in the United States each year. The prognostic significance of DCIS has been called into question, as small studies have shown that anywhere from 20% to 50% of untreated cases progress to cancer, 4 and randomized trials have not shown a survival benefit from radiotherapy or endocrine therapy after breastconserving surgery. 8 With screening mammography detecting smaller, lower risk lesions, the potential for overtreatment is increasingly being discussed. DCIS is a heterogeneous condition, however, that does not always herald a benign outcome. A recent Surveillance, Epidemiology, and End Results analysis found that the risk of dying of breast cancer was 3 times higher for women with DCIS in comparison with cancerfree women. This risk was particularly notable in women younger than 40 years (a 12fold increase) and Black women (a 7.5fold increase). Limitations of the prognostic tools used to guide treatment decisions have led to differences of opinion among physicians and thus significant confusion for many women with DCIS. The latter is shown clearly in a qualitative study by Rosenberg et al, which was conducted in preparation for the Comparing an Operation to Monitoring, With or Without Endocrine Therapy (COMET) trial for lowrisk DCIS. In 2014, the authors administered a webbased survey to patients with DCIS participating in the Susan Love Research Foundation’s Army of Women which asked openended questions about what was difficult and confusing regarding the patients’ diagnosis and treatment. Responses were analyzed from a final sample of 1832 participants, and 4 primary themes emerged: uncertainty surrounding the DCIS diagnosis, uncertainty about treatment, concern about side effects, and concern about recurrence and/or invasive breast cancer. The authors concluded that there is a need for better patientprovider communication as well as additional collection of patientreported outcomes for various treatment options, including active surveillance. When we interpret this study, it is worth noting that the authors were gathering specific data for a specific purpose: they sought to understand negative aspects of the patient experience in a group of women who largely received standard DCIS treatment to better inform a future clinical trial of active surveillance. Only 1 neutral question was asked (“Is there anything else you would like to share with us about your DCIS diagnosis or treatment?”), and the authors did not inquire about aspects of the DCIS journey that went well. This study did not address the degree of uncertainty or concern experienced by women who received more therapy versus less therapy or demonstrate that women who underwent active surveillance were happier overall with their treatment decision. Finally, women with a second primary or disease recurrence were excluded, so the perspective of those who experienced these significant undesirable oncologic outcomes was not captured in this analysis. There are, however, several important findings from this study that are valuable to clinical providers. One is the confusion that women expressed about their DCIS diagnosis (“Is it cancer or not?), which persisted even years after they had completed treatment. This is perhaps not surprising in light of the various opinions of DCIS providers. Nyhof et al performed a qualitative analysis of communication practices and perceptions of clinicians involved in the care of women with DCIS based on detailed telephone interviews conducted in 2017. They found that, even at this relatively recent time point, DCIS was often described with conflicting terminology. For example, a radiation oncologist reported