Edinburgh Napier University

  Background:
The experiences of women who develop lymphoedema in the breast or trunk (BTL) after treatment for breast cancer have received little attention in either the academic or clinical setting. Consequently, women’s support needs remain unrecognized.

Objective and Design:
As this study sought to gain an understanding of women’s unheard experiences of a poorly understood condition, it was underpinned by The Silences Framework which facilitates research into sensitive or marginalized issues.

Sample and Methods:
Fourteen women with BTL participated in individual, unstructured interviews, some using photographs or drawings to reflect their experiences. The data was analyzed using the Listening Guide.

Findings:
Participants revealed that they were unprepared for the development of BTL; for many, the symptoms were unfamiliar and distressing. Furthermore, their concerns were often dismissed by healthcare professionals (HCPs), leading to long delays in obtaining an accurate diagnosis and treatment. For some women, the practical and emotional impact of developing BTL was profound.

Practice Implications:
Increased awareness and education about the risk of BTL as a potential side-effect of treatment for breast cancer is required for HCPs and patients. This will alleviate distress, better prepare patients, and ensure timely referral for treatment to manage this chronic condition.