Incidence, risk factors, and estimates of a woman's risk for developing secondary lower limb lymphedema and lymphedema-specific supportive care needs in women treated for endometrial cancer

Abstract

Women undergoing pelvic lymphadenectomy seem to be at increased risk for secondary lower extremity lymphedema. Reported incidence rates of lymphedema after lymphadenectomy for endometrial cancer vary widely, ranging from 1% to 18%. There is no cure for lymphedema, but it can be successfully managed. Women with lymphedema have several problems. These include physical discomfort, pain, reduced mobility, body image issues, sexuality issues, and distress. Only 1 study has examined the specific supportive care needs of women with endometrial cancer who developed lymphedema after lymphadenectomy. This large population-based study was designed to quantify the cumulative incidence of lymphedema, to evaluate risk factors of developing lymphedema after treatment of endometrial cancer, and to estimate absolute risk of individuals. Another aim was to assess unmet needs of patients with lymphedema. After treatment of primary endometrial cancer, 1243 patients were followed for 3 to 5 years after diagnosis; a subset of 643 completed a follow-up survey asking specific questions about lymphedema and their lymphedema-related support needs. Women who self-reported lymphedema on the follow-up survey or who had a report of lymphedema in their abstracted medical records were classified as having lymphedema. Multivariable logistic regression models were used to estimate absolute risk for developing lymphedema and to assess potential risk factors of this condition. Overall, 13% of women treated for endometrial cancer developed lymphedema. The primary risk factor of lymphedema was the number of lymph nodes removed. Other factors associated with modest additional risk were use of adjuvant chemotherapy or radiation or nonsteroidal anti-inflammatory drugs before cancer diagnosis. The absolute risk for lymphedema was greater than 50% for women who had 15 or more nodes removed and 2 to 3 additional risk factors and 30% to 41% for women with 15 or more nodes removed and 0 to 1 other risk factor or 6 to 14 nodes removed and 3 additional risk factors. In comparison, risk dropped to 8% or lower among women who had no nodes removed or up to 5 nodes removed but no other risk factors. More than half (55%) of women with lymphedema reported unmet need(s), especially for lymphedema-related costs and pain. These findings show that 1 (13%) in 8 women treated for endometrial cancer develop lymphedema. Clinicians should inform patients who have undergone lymphadenectomy of the high risk for developing lymphedema and also evaluate and address the considerable unmet needs of individual patients.