Lymphedema is an understudied consequence of surgery for breast cancer. It is estimated that as many as 60% of breast cancer survivors report symptoms of lymphedema. Few studies have examined the impact of lymphedema on the lives of women with breast cancer. The goal of this pilot study was to identify knowledge about, treatment received for, and the effect of lymphedema among a group of breast cancer survivors and physicians. Forty women with lymphedema and 10 physicians who treat breast cancer patients participated. Overall, women knew little to nothing about lymphedema before they developed it. After diagnosis, the primary source of information about lymphedema was a doctor or physical therapist. The majority of women received compressive garment therapy (75%), 46.9% received mechanical compressive therapy, 26% received bandaging, and 22% received physical therapy. More than half (55%) reported that clothing and appearance were affected by their condition and 48% reported that routine daily activities were impaired. Hot weather (58%) and regular arm use (40%) were reported to exacerbate the swelling. Most physicians reported that they did not routinely counsel women or provide written information on lymphedema prevention to their patients, and the extent to which women's daily living was affected by the condition was not always recognized. These findings have implications for interventions aimed at educating women and providers about lymphedema.