Current status of education and treatment resources for lymphedema.

BACKGROUND

Secondary lymphedema (LE) resulting from breast cancer surgery has continued to be an ignored medical diagnosis in U.S. medicine. Subsequently, the majority of women/men undergoing axillary lymph node dissection have not received education in pre- or postoperative LE prevention, causing hundreds of thousands of patients to develop LE. As a result of this ignorance, once the LE develops, these patients receive no or harmful treatment.

METHODS

Over the last decade, the National Lymphedema Network (NLN) has created awareness in the medical community, among patients, and in the general public through information dissemination, educational materials, a national conference, and the activism of patients and a small group of concerned professionals. Complete decongestive physiotherapy (CDP), which includes manual lymph drainage, is a successful treatment for LE that has now been introduced.

RESULTS

Slowly, the U.S. medical community is beginning to recognize and support this condition and its treatment, and secondary LE has now become an acceptable diagnosis (ICD9-457.0). Subsequently, due to patient and medical activism and the work of the NLN, Medicare now covers 2 weeks of CDP treatment (in Florida), and two landmark bills (AB-12 and S-609) that will cover LE treatment for postbreast carcinoma patients are currently pending (as of February 22, 1998).

CONCLUSIONS

In the last decade, the NLN has developed a strong foundation of knowledge and has planted LE on the medical map in the United States. With collaboration between the NLN and all breast carcinoma groups and LE specialists, it is hoped that lymphology will become a standard course of study in medical schools across the country and that LE will become a household word, with proper treatment available for postbreast carcinoma LE patients in the United States.