PhD in Nursing Science Program

Symptom Clusters Occuring with Lymphedema after Breast Cancer

Dissertation under the direction of Professors Janet S. Carpenter and Nancy Wells

Approximately 2.5 million breast cancer survivors live in the United States and lymphedema in the affected arm is a serious problem for many of them. Research suggests that despite being successfully treated, these women continue to experience a decline in quality of life. This disconnect suggests there is an underlying set of symptoms occurring with lymphedema in breast cancer survivors that is not responsive to treatment designed solely to reduce limb size. This dissertation study assessed outcomes associated with lymphedema related to breast cancer treatment and determined if lymphedema occurring subsequent to breast cancer treatment occurred within a symptom cluster. A revised version of the Lenz Theory of Unpleasant Symptoms served as the organizing framework for the study. The setting for this two group descriptive, comparative, correlational, cross-sectional, mixed methods study was a metropolitan area and surrounding rural counties in the southeastern United States. A convenience sample of 128 breast cancer survivors was recruited from healthcare and community environments; 64 with lymphedema and 64 without lymphedema.

Key findings of this study were: 

(1) women with lymphedema reported symptoms that were not reported by breast cancer survivors without lymphedema. These symptoms included alteration in limb sensation (heaviness, tightness, aching, burning, swelling, hardness, stabbing, pins and needles, and numbness), loss of confidence in body, decreased physical activity, fatigue, and psychological distress; (2) women with lymphedema reported a larger total number of symptoms than those without lymphedema; (3) women with lymphedema reported a poorer quality of life; (4) body mass index correlated with all outcome variables; (5) sociodemographic variables did not correlate with either perceived arm size difference or actual limb volume difference; (6) duration of lymphedema did not correlate with mean symptom intensity, mean symptom distress, or mean symptom total; (7) participants narrative comments revealed multiple quality of life, physical health, and psychological issues indicative of an interrupted life; (8) qualitative data supported quantitative findings; and (9) findings of a symptom cluster and physiological, psychological, and situational influencing factors were congruent with the organizing framework.