Breast cancer survivors with lymphedema: glimpses of their daily lives.

Breast cancer survivors with lymphedema experience physical, psychosocial, and quality-of-life difficulties. Cancer treatment-related lymphedema often is viewed as a disabling condition, and that assumption has fostered an environment in which oncology nurses are not actively involved in the care of patients with lymphedema. Little is known about how breast cancer survivors with lymphedema structure their daily lives. This article describes an effort to determine whether lymphedema truly is a disabling condition by collecting symptom data and self-generated narratives from breast cancer survivors with lymphedema regarding their eating habits, daily activities, substance use, and future plans. Although the sample experienced multiple symptoms, lymphedema duration and degree of extracellular arm fluid did not appear to influence those symptoms. In addition, participants led full, rich, busy lives. The findings do not support the notion that patients with lymphedema live as disabled people. A disability model may not be optimal to guide research design or patient care; rather, a symptom management model better explains the findings and implies that active involvement by nurses in lymphedema patient care and education is indicated.