Worse and worse off: the impact of lymphedema on work and career after breast cancer

PURPOSE: Our study examines the impact of breast cancer-related lymphedema on women’s work and career. Our research addresses a significant knowledge gap regarding the additional impact of lymphedema on breast cancer survivors. METHODS: An online national survey was conducted with 361 women who either had breast cancer without lymphedema (Group 1, n = 209) or breast cancer with lymphedema (Group 2, n = 152). Participant recruitment was supported by the Breast Cancer Network Australia and the Australasian Lymphology Association. RESULTS: Both breast cancer and lymphedema had a significant negative influence on women’s work and career. Respondents reported changes in employment resulting from stress and/or physical impairment, which affected attendance and work performance. The perceived negative impact of breast cancer on respondents’ work and career was noticeably greater in Group 2 (63 %) than Group 1 (51 %) (p = 0.03). Of the participants who were in paid employment at some time (either at diagnosis of lymphedema or at the time of the survey (n = 103), 43 (42 %) indicated that lymphedema impacted their work performance. The impact of lymphedema on work was incremental with increased severity of lymphedema (range 22–75 %). The annual number of days off work for subclinical/mild lymphedema participants was 1.4 versus 8.1 days for moderate or severe participants (p = 0.003). CONCLUSIONS: This study identifies an additional detrimental effect of lymphedema on women’s work and career over and above the initial impact of breast cancer and provides empirical evidence for future prospective studies and policy improvement.