Exploring women’s experiences of breast or trunk lymphoedema following breast cancer treatment

Although cancer survivorship is frequently couched in celebratory or defiant language, many women who have breast cancer must live with treatment side effects such as lymphoedema. Estimates of breast lymphoedema are as high as 90.4%1, yet there remains scant research and patient information about either breast or trunk lymphoedema (BTL); and women’s experiences remain absent in the academic literature. The aim of the study was to explore women’s experiences of developing and living with BTL. The study was underpinned by The Silences Framework2 which was developed to facilitate research into marginalised topics. Fourteen women aged between 41 and 83 took part in individual, unstructured interviews; most participants had lymphoedema in their treated breast. Ten women took up the invitation to use images in their interview. Data analysis drew upon the Voice-Centred Relational Method and its analytical tool the Listening Guide3. It emerged that women were unprepared for the development of BTL; symptoms were unfamiliar and distressing to many women. Frequently women’s concerns were ignored or dismissed by healthcare professionals (HCPs), resulting in lengthy delays in obtaining a diagnosis and appropriate treatment. For some participants, the practical and emotional impact of BTL was profound. The study recommendations address women’s disempowerment and marginalisation resulting from a lack of patient information about the risk of BTL and poor awareness among HCPs. They include providing patients with information about BTL in a consistent, personalised, and repeated manner; educating HCPs about BTL symptoms, management, and impact upon patients; harnessing women’s expertise within patient resources; and developing methods to promote BTL’s early detection and management.