Background: Guideline-concordant care (GCC) for DCIS includes surgery, radiation, and endocrine treatment. Active surveillance (AS) is a strategy under study for management of low risk DCIS. The PORTAL Study was designed to evaluate patient reported outcomes (PROs) after GCC for DCIS compared to women who received AS for DCIS combined with women with a history of other atypical lesions (atypical ductal hyperplasia (ADH), or atypical lobular hyperplasia/lobular carcinoma in situ (LN), as proxies for AS-managed DCIS. Methods: The PORTAL Study invited women age≥ 18, diagnosed with DCIS, ADH, or LN between 2012-2017 from 4 academic centers to complete a one-time, cross-sectional survey. Clinical, pathological, and treatment information was obtained from medical record review. The primary outcome was breast/chest wall pain assessed with the Breast Cancer Pain Questionnaire (BCPQ) including severity (10-point scale, ≥3=clinically relevant), a Pain Burden Index (PBI), which is a composite of severity, frequency, and location (breast, arm, side, axilla) and assessments of sensory disturbances, and impact of pain on emotional and physical functioning. Additional PROs included measures of generalized pain (Brief Pain Inventory), anxiety (STAI-Short Form), depression (CES-D), and QOL (Quality of Life in Adult Cancer Survivors). Pain, psychosocial, and QOL outcomes were compared between the GCC vs. AS groups using Wilcoxon Rank Sum and Chi-Square tests. Results: Of 1565 patients invited and sent a survey, 927 (59%) responded to the survey with evaluable pain outcome data. Median time from diagnosis was 3.8 years. Median age at survey completion was 58 (range: 26-94) years; 13% identified as non-White; 4% Hispanic. Among those with DCIS (n=554), 97% had GCC (62%, lumpectomy, 38%, mastectomy; 48%, radiation), representing 58% of participants vs 42% representing AS. The prevalence of clinically relevant pain was higher in the GCC vs. AS group (16.5% vs 9%, p=.0009). Median BCPQ-PBI, sensory disturbance, physical, and emotional impact scores were all higher (p<.0001) in the GCC vs. AS group (Table); BPI scores for pain severity and interference were similar between groups. QOL, anxiety and depressive symptoms were similar among women who had GCC compared to the AS group. Conclusion: Women with DCIS who have undergone GCC experience more breast/chest wall pain and report greater impact of pain on physical and emotional functioning in long term follow-up, compared to women who have undergone AS for DCIS or are managed for other atypical lesions. Given that many women with low risk DCIS may be unlikely to develop invasive cancer, improved understanding of the potential trade-offs of GCC vs AS can help support informed decision making in women with DCIS who are considering their treatment options. Ongoing prospective trials will provide further information regarding risks and benefits of AS vs GCC for women with low risk DCIS.
BCPQ Scores, GCC vs. ASGCCASMean (range)Median (IQR)Mean (range)Median (IQR)p*PBI6.4 (0-80)0 (0-9)2.9 (0-64)0 (0-0)<.0001Sensory disturbance1.4 (0-9)0 (0-2)0.6 (0-9)0 (0-0)<.0001Physical impact9.6 (0-67)0 (0-19)4.4 (0-56)0 (0-0)<.0001Emotional impact1.4 (0-33)0 (0-1)0.6 (0-38)0 (0-0)<.0001*Wilcoxon rank sum test comparing median scores
Citation Format: Shoshana M Rosenberg, Laura H Hendrix, Kristin L Schreiber, Alastair M Thompson, Isabelle Bedrosian, Kevin S Hughes, Thomas Lynch, Desiree Basila, Deborah E Collyar, Elizabeth S Frank, Sonja Darai, Conor Lanahan, Jeffrey R Marks, Jennifer K Plichta, Terry Hyslop, Ann H Partridge, E. Shelley Hwang. The Patient-reported Outcomes after Routine Treatment of Atypical Lesions (PORTAL) study: Pain, psychosocial wellbeing, and quality of life among women undergoing guideline concordant care for DCIS vs. active surveillance for in situ and atypical lesions [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P1-21-07.