Many women experience confusion and distress after ductal carcinoma in situ diagnoses

Each year in the United States, nearly 50,000 women are diagnosed with ductal carcinoma in situ (DCIS), a non-invasive breast condition that cannot spread. New research published by Wiley online in CANCER, a peer-reviewed journal of the American Cancer Society, indicates that many women with DCIS experience confusion and distress about their diagnosis and treatment.

In situ is a Latin phrase translating to "on site," meaning that the cancer is localized and has not spread-;sometimes referred to as stage 0 or pre-cancer. Although DCIS is confined to the breast, it is often treated because if left alone, some DCIS cells may change to become invasive cancer cells that are capable of spreading. Because DCIS carries a good prognosis and rarely progresses to cancer, it is important to understand patients' wishes concerning treatment. Some may want to undergo surgery, others may prefer non-surgical medical interventions, and still others may choose to take a "watch and wait," or active monitoring, approach.

To examine the clinical and psychosocial impact of a DCIS diagnosis from the patient's perspective and to understand patients' primary concerns at diagnosis through long-term follow-up, Shoshana M. Rosenberg, ScD, MPH, of Weill Cornell Medicine in New York City, and her colleagues administered a one-time web-based survey with open-ended questions to patients with DCIS. Data from 1,832 respondents were analyzed.

Four primary themes were identified:

• uncertainty surrounding a DCIS diagnosis,
• uncertainty about DCIS treatment,
• concern about treatment side effects, and
• concern about recurrence and/or developing invasive breast cancer.

When diagnosed, patients were often uncertain about whether they had cancer or not, and whether they should be considered a survivor. Patients also often questioned the appropriateness of the amount of treatment they received. Participants expressed concern about the cancer spreading or becoming invasive, and that they were not necessarily doing enough to prevent recurrence.

Our findings build on previous studies that have also reported on the ambiguity around the nature and prognosis of DCIS. Improving communication around risk as well as the harms and benefits of different DCIS management options through the use of decision support tools is one potential approach to address this issue."

Dr. Shoshana M. Rosenberg, ScD, MPH, Weill Cornell Medicine

An accompanying editorial notes that the study provides important insights that can inform clinicians as they care for patients with DCIS. "Providers should seek every opportunity to understand each patient's unique experience and provide education and other forms of support to promote their overall well-being," the authors wrote.