Women with a history of ductal carcinoma in situ reported confusion and concern about diagnosis and treatment of the noninvasive breast condition, according to results of a national web-based survey published in Cancer.

“Following a diagnosis of DCIS, many respondents reported having felt uncertain about their diagnosis, as well as aspects of their treatment, including both overtreatment and undertreatment,” Shoshana M. Rosenberg, ScD, MPH, assistant professor of population health sciences in the division of epidemiology at Harvard Medical School and Dana Farber Cancer Institute, told Healio. “Concern about recurrence and invasive breast cancer was also a common theme among respondents.”

Researchers recommended prioritizing formulation of strategies to improve patient and provider communication about the nature of DCIS and address gaps in knowledge of management options.

Methodology

Nearly 50,000 women are diagnosed with DCIS each year and many are likely overtreated for it, according to the researchers. This underscores the importance of patients fully understanding the disease and its associated risks so they can make informed decisions regarding treatment options, which can include surgery or active monitoring.

The analysis by Rosenberg and colleagues included 1,832 women (median age at diagnosis, 60 years) in the Susan Love Army of Women breast cancer registry who answered open-ended questions about their DCIS diagnosis and treatment through a web-based survey administered in July 2014.

Shoshana M. Rosenberg

“The survey was developed to inform and complement patient-reported endpoints for a clinical trial for women with low risk DCIS, the Comparing an Operation to Monitoring, with or without Endocrine Therapy (COMET) Trial,” Rosenberg said. “While COMET is ongoing, we expect findings from this trial to provide important data regarding the impact of different management strategies (active monitoring vs. surgery) for low-risk DCIS on both disease and quality-of-life outcomes.”

Researchers applied deductive and inductive codes to survey responses and summarized common themes.

Key findings

Results showed four primary themes among respondents:

• uncertainty surrounding a DCIS diagnosis;
• uncertainty regarding DCIS treatment;
• concern about treatment adverse events; and
• concern about recurrence and/or developing invasive breast cancer.

Additionally, participants often expressed uncertainty about whether or not they had cancer at diagnosis and should be considered a survivor. The women also questioned the amount of treatment needed and harbored concerns about the “cancer spreading” or becoming invasive and that they were not “doing enough” to prevent recurrence, researchers wrote.

“Our results confirm what others have observed regarding the uncertainty and confusion patients can feel when they are diagnosed with DCIS and further support the need for attention and intervention to address this issue,” Rosenberg told Healio.

Implications

Several key findings from the study are valuable to clinical providers, Bethany M. Anderson, MD, associate professor in the department of human oncology at University of Wisconsin School of Medicine and Public Health and member of the UW Health Breast Center, and Julia R. White, MD, Klotz chair in cancer research and professor of radiation oncology at The James Cancer Hospital and Solove Research Institute at The Ohio State University, wrote in a corresponding editorial.

Patients’ confusion about their DCIS “is perhaps not surprising” as previous analyses of practices and perceptions among clinicians caring for women with DCIS revealed the disease “was often described with conflicting terminology,” Anderson and White wrote.

“This qualitative analysis by Rosenberg [and colleagues] offers important insight into the experience of women with DCIS that can inform providers,” they wrote. “Improved awareness of the confusion, anxiety and uncertainty that women with DCIS may experience can inform more empathetic communication patterns.”

Moving forward

Rosenberg told Healio she expects the findings from the COMET trial to provide more critical information on disease and quality-of-life and psychosocial outcomes, as women enrolled on the study are being followed for 5 years. This will give researchers the ability to learn about both short-and long-term experiences of patients with DCIS who are managing with either surgery or active monitoring.

“In turn, providers will be able to share this information with newly diagnosed women with DCIS that can help manage expectations following a diagnosis and inform treatment decision-making,” Rosenberg said. “Future research should focus on implementing approaches to improve communication around the harms and benefits of different DCIS management options.”

References:

Anderson BM, et al. Cancer. 2022;doi:10.1002/cncr.34125.
Rosenberg SM, et al. Cancer. 2022;doi:10.1002/cncr.34126.

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