Abstract P4-15-11: “Is it cancer or not?” A qualitative exploration of patient perspectives surrounding the diagnosis and treatment of DCIS
Authors: Rosenberg SM , Gierisch JM , Lowenstein C , Frank ES , Collyer D , Partridge AH , Hwang ES 
Published: February 2018

Abstract
Background: Approximately 53,000 women in the US undergo treatment for ductal carcinoma in situ (DCIS) each year, of whom only 20-30% may benefit. To better understand both the clinical and psychosocial impact of a DCIS diagnosis and different management approaches, we sought to engage women with DCIS regarding their experience surrounding diagnosis (dx) and treatment.
Methods: In July 2014, we administered a web-based survey through an email listserv to the Susan Love Army of Women that resulted in over 2000 respondents self-identified as patients with DCIS. The survey included open-ended questions designed to assess patients' perspectives on their experiences with the dx and treatment of their DCIS. Responses were coded using an inductive coding schema; common themes were identified and summarized. Women who reported an invasive cancer, a second primary or recurrent tumor, or other benign breast lesions (in absence of DCIS) were excluded from analysis.
Results: Among 1,857 women included in the analytic sample, the average age at dx was 60 years; 18% women were ≤2 years from their dx; most women (93%) identified as white. Four primary themes were identified: 1) uncertainty about DCIS dx; 2) uncertainty surrounding treatment; 3) concern about side effects from treatment; and 4) concern about recurrence and invasive breast cancer. Uncertainty about treatment often manifested as women questioning whether they were over-treated for their DCIS, “over-reacting by having surgery,” or wondering if “watchful waiting might be better.” In addition to recalling bothersome side effects and sequelae from both their local and systemic (hormonal) therapy, women also expressed doubt about their treatment choices, specifically, that they were not necessarily “doing enough” with many women citing recurrence, the “cancer spreading”, or becoming invasive, as primary concerns. Uncertainty about whether DCIS was cancer or not, was noted by many women, with one calling it a “grey zone” and others articulating that DCIS is “having a dx that's not really cancer… yet you might still lose your breast,” and experiencing “confusion about my status as a cancer patient - as in I wasn't sure if I even was a cancer patient. I had no idea where I fit in…”
Conclusion: A DCIS dx can be confusing and distressing, with women making treatment decisions based on a limited understanding of the disease, its risks, and pros and cons of treatment options. There is a need to develop additional strategies to improve the management of this disease and other screen-detected conditions, through better understanding of the disease and its outcomes, coupled with improved methods to communicate this information to those affected. Our study highlights the potential value of collecting patient reported outcomes (PROs) to inform clinical research and care. Ongoing clinical trials like the COMET, LORIS, and LORD studies, which incorporate robust PROs, should provide additional evidence for patients, health care providers and other stakeholders regarding the medical and psychosocial benefits and harms of different DCIS management options.
Citation Format: Rosenberg SM, Gierisch JM, Lowenstein C, Frank ES, Collyer D, Partridge AH, Hwang ES. “Is it cancer or not?” A qualitative exploration of patient perspectives surrounding the diagnosis and treatment of DCIS [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P4-15-11.