Burden of lymphedema in long‐term breast cancer survivors by race and age

Background Risk assessment for breast cancer–related lymphedema has emphasized upper‐limb symptoms and treatment‐related risk factors. This article examined breast cancer–related lymphedema after surgery, overall and in association with broader demographic and clinical features. Methods The Carolina Breast Cancer Study phase 3 followed participants for breast cancer–related lymphedema from baseline (on average, 5 months after breast cancer diagnosis) to 7 years after diagnosis. Among 2645 participants, 552 self‐reported lymphedema cases were identified. Time‐to‐lymphedema curves and inverse probability weighted conditional Cox proportional hazards model were used to evaluate whether demographics and clinical features were associated with breast cancer–related lymphedema. Results Point prevalence of breast cancer–related lymphedema was 6.8% at baseline, and 19.9% and 23.8% at 2 and 7 years after diagnosis, respectively. Most cases had lymphedema in the arm (88%‐93%), whereas 14% to 27% presented in the trunk and/or breast. Beginning approximately 10 months after diagnosis, younger Black women had the highest risk of breast cancer–related lymphedema and older non‐Black women had the lowest risk. Positive lymph node status, larger tumor size (>5 cm), and estrogen receptor–negative breast cancer, as well as established risk factors such as higher body mass index, removal of more than five lymph nodes, mastectomy, chemotherapy, and radiation therapy, were significantly associated with increased hazard (1.5‐ to 3.5‐fold) of lymphedema. Conclusions Findings highlight that hazard of breast cancer–related lymphedema differs by demographic characteristics and clinical features. These factors could be used to identify those at greatest need of lymphedema prevention and early intervention. Lay summary In this study, the aim was to investigate breast cancer–related lymphedema (BCRL) burden. This study found that risk of BCRL differs by race, age, and other characteristics. A population‐based racially diverse cohort of women with breast cancer was used to assess burden of lymphedema as well as related demographic and clinical features. The findings could be used to identify those at greatest need of lymphedema prevention and early intervention after breast cancer diagnosis.