Arm swelling and psychological well-being among long-term breast cancer survivors

Purpose: Lymphedema is an under-reported and debilitating consequence of axillary node dissection among breast cancer survivors. This study describes the characteristics of arm and hand swelling and the effects of swelling on psychological well-being among a population of breast cancer survivors who participated in a clinical trial coordinated by the Cancer and Leukemia Group B (CALGB 8541) 9 – 16 years ago. Methods: 331eligible survivors of CALGB 8541 were contacted and asked to complete a mailed survey assessing questions about demographics, quality of life, arm/hand swelling, sexuality, breast cancer anxiety, spirituality, and depression. Results: Of the 245 women (mean age 61.9 years; 93% Caucasian; average 12.4 years post-diagnosis) who completed a survey, 75 (31%) reported arm/hand swelling since their surgery. Of these women, 76% reported current swelling, and half reported constant swelling, mainly in the upper arm. Self-reported swelling was either mild or moderate in 88% of the women. Women perceived the causes of their swelling to be removal of lymph nodes (73%) and general arm use (23%). Swelling interfered with wearing clothing (36%) and perceptions about general appearance (32%). Few women (37%) sought treatment for swelling. Swelling severity and interference with daily activities negatively affected physical functioning, however swelling showed little effect on psychological well-being. Conclusions: Arm/hand swelling is a significant problem for long-term survivors of breast cancer, negatively affecting physical well-being. These findings suggest that educational efforts to raise awareness about lymphedema are critical so that women may seek help early and may improve their health-related quality of life.