Lymphedema Signs, Symptoms, and Diagnosis in Women Who Are in Minority and Low-Income Groups and Have Survived Breast Cancer

Background: Breast cancer-related lymphedema (BCRL) is a well-known side effect of cancer and its treatment with wide-ranging prevalence estimates. Objective: This study describes associations between breast cancer-related lymphedema (BCRL) signs, symptoms, and diagnosis for women who were African American, white, or had a low income and survived breast cancer. Design: This is a cross-sectional, observational study that used a computer-assisted telephone interview. Methods: Women who had survived breast cancer were queried on the presence of 5 lymphedema signs and symptoms (edema in the breast, axilla, arm, and/or hand; tissue fibrosis; pitting; hemosiderin staining; heaviness) and whether they had a diagnosis of BCRL. Relationships between signs/symptoms and diagnosis for each group were evaluated with kappa and chi-square statistics. Results: The study sample included 528 women who had survived breast cancer (266 white and 262 African American), with 514 reporting complete data on household income; 45% of the latter reported an annual household income of ≤$20,000. Women who were African American or had a low income were nearly twice as likely as women who were white to have any of 8 signs/symptoms of BCRL. Regardless of race and income, >50% of women with all BCRL signs and symptoms reported that they were not diagnosed with BCRL. Limitations: The main limitations of our study are the lack of medical chart data and longitudinal design. Conclusions: Women who were African American or had a low income and had survived breast cancer had a greater burden of BCRL signs and symptoms than women who were white. The lack of a strong association between BCRL signs, symptoms, and diagnosis suggests that BCRL may be underdiagnosed. These findings suggest that more rigorous screening and detection of BCRL-especially for women who are African American or have a low income-may be warranted. Cancer rehabilitation programs may be able to fill this gap.