The purpose of this study was to explore and describe breast cancer survivors' lymphedema-related symptom experiences. As a serious chronic condition from breast cancer treatment, lymphedema, or persistent swelling, is caused by chronic accumulation of lymph fluid in the interstitial spaces of the affected limb or surrounding areas. While significant prevalence of ongoing multiple symptoms have been reported, little is known about how survivors with lymphedema perceive and respond to lymphedema-related symptoms in their daily lives. This study employed a descriptive phenomenological method. Thirty-four participants were recruited in the US. Three in-depth interviews were conducted with each participant; a total of 102 interviews were completed, audiotaped, and transcribed. Interview transcripts and field notes were the data sources for this analysis, which was part of three larger studies. Data were analyzed to identify the essential themes within and across cases. Four essential themes were revealed: living with perpetual discomfort; confronting the unexpected; losing pre-lymphedema being; and feeling handicapped. Participants experienced multiple symptoms on a daily basis. Distress was heightened when women expected symptoms to disappear but instead they remained as a "perpetual discomfort." Moreover, distress was intensified when symptoms evoked unexpected situations or when symptoms elicited emotional responses powerful enough to change perceived personal identity. Findings suggest that symptom distress may encompass temporal, situational and attributive dimensions. Prospective studies are needed to examine lymphedema-related symptom distress in terms of these dimensions so that more specific interventions can be developed to target distress occurring in each dimension.

Through attentive and empathic assessment, clinicians need to be alert to the unmet needs of longer-term survivors, including the experience of survivor loneliness and the importance of identifying and assisting survivors who describe heightened distress. Prospective studies are needed to examine survivor loneliness and the factors that make some women more vulnerable to psychological distress. Grounded theory studies are needed to delineate the phases and challenges of breast cancer survivorship, including survivor loneliness.

Follow-up care for breast cancer survivors should foster dialogue about ways that symptoms might emerge and that unexpected situations might occur. Prospective studies are needed to examine symptom distress in terms of temporal, situational, and attributive dimensions and explore the relationship between symptom distress and psychological distress after breast cancer treatment.

No abstract