Objective: In 1998, the American Cancer Society (ACS) Lymphedema Workshop, called for a three phase approach to patient lymphedema education: (1) pretreatment, (2) postoperatively, and (3) continuing education. The objectives of this study were: to compare recalled pretreatment lymphedema education before and after the 1998 ACS call; compare recalled lymphedema pretreatment education between women with and without breast cancer treatment-related lymphedema; and identify breast cancer survivors perceived sources of lymphedema education.
Methods: One hundred and forty-nine breast cancer survivors (74 with lymphedema and 75 without lymphedema) were asked: (1) Prior to having breast cancer treatment did anyone talk to you about your risk for lymphedema? If yes, who? (2) Prior to having breast cancer treatment did anyone talk to you about ways to decrease your risk for lymphedema? If yes, who? (3) If you want to learn more about lymphedema occurring after breast cancer treatment who would you ask or where would you look for information?
Results: Individuals with lymphedema consistently recalled receiving less education and a decline in recalled risk reduction education in the lymphedema group occurred after 1998.
Discussion: Barriers exist to the integration of ACS suggested pretreatment lymphedema educational protocols and risk reduction education may influence risk of developing lymphedema.
Conclusion: Pretreatment lymphedema education may improve breast cancer survivor's recall of educational information received about lymphedema.
Practice implications: Healthcare providers must be well versed about breast cancer treatment-related lymphedema and communicate this knowledge to patients on a consistent basis.