Unmet needs and problems related to employment and working as reported by survivors with metastatic breast cancer

Purpose By 2020, the US population living with metastatic breast cancer (MBC) has exceeded 165,000. A knowledge gap exists regarding the factors affecting work ability for these individuals. We sought to characterize the work status, importance of work, and work-related information needs for women living with MBC. Methods We conducted an online survey using an MBC listserv and clinic flyers in 2014–2015. Respondents working at the time of MBC diagnosis were divided into “stably-working” and “no-longer-working” based on employment status at the time of survey. Comparisons were made with chi-square or two-tailed t test. Results Respondents ( n = 133) were predominantly non-Hispanic White (93.2%); 72 were stably-working, while 61 reported no-longer-working. Those no-longer-working were older (54.0 vs 49.5 years old, p < 0.01, Cohen’s d = 0.55), further from initial diagnosis of MBC (4.6 vs 3.3 years, p < 0.01, Cohen’s d = 0.36), and reported high rates of life interference due to MBC ( n = 51, 83.6% vs n = 39, 54.2%, p < 0.01, Cramer’s V = 0.32). Stably-working respondents considered work to be important ( n = 58, 80.5% vs n = 18, 29.5%, p < 0.01, Cramer’s V = 0.57); the top reasons cited were financial and/or insurance (80.4%), importance of staying busy (67.9%), and desire to support themselves and family (64.3%). The stably-working respondents more often valued information on how to talk with employers or co-workers about diagnosis ( n = 38, 57.6% vs n = 16, 27.1%; p < 0.01), legal rights in workplace ( n = 43, 65.2% vs n = 22, 36.7%; p < 0.01), when to think about stopping work ( n = 45, 68.2% vs n = 18, 30%; p < 0.01), and applying for disability ( n = 42, 63.6% vs n = 26, 42.6%; p < 0.05), when compared to no-longer-working. Conclusion The decision to stop working may represent a subsequent event driven by cancer progression. This research highlights the ongoing need of information targeting MBC to facilitate the management of employment and financial issues early in the MBC trajectory.