The psychosocial effects of cancer-related lymphedema

Life-long lymphedema is a common complication of cancer therapy. In this Canadian study, we adopted a phenomenological methodology to explore the experience of patients with cancer-related lymphedema, and their spouses. We conducted audio taped semistructured interviews with 11 patients and eight spouses, who were recruited through a university hospital-based lymphedema clinic and through local lymphedema therapists. We developed an analytical framework from the data themselves, and tentative hypotheses and thematic categories that represented shared case features. Participants expressed frustration because of lack of financial support from government and insurance companies, inadequate knowledge and perceived lack of interest on the part of physicians, and lack of awareness in society in general. This study suggests further investigation of the funding of lymphedema treatments, and of the effect of lymphedema on work, intimacy, and leisure activities. Our research findings will inform educational initiatives and cancer rehabilitation programs.