Knowledge about preventing and managing lymphedema: a survey of recently diagnosed and treated breast cancer patients.

Physical therapists, books and oncologist's staff were the most frequently cited sources of lymphedema prevention and management information in a telephone survey of 148 recently treated breast cancer patients. Awareness, current practice and intention to practice 13 recommended prevention behaviors were low, and variations in these indices and in information sources were observed between those reporting any swelling and those who did not. Citing radiation oncologists as an information source reflected significantly higher levels of awareness, practice and intention as compared to not citing them. Also, citing oncologists reflected lower scores on the three indices as compared to not citing them. The results suggest that lymphedema prevention and management information is not getting to breast cancer survivors in a timely fashion and underscore the urgent need to develop and implement appropriate educational strategies. Additionally, research into factors that could motivate survivors to practice the recommended behaviors is warranted.