Patient Perceptions of Breast Cancer Surgery Related Lymphoedema and Adoption of Risk Reducing Strategies

Background Despite the decreasing risk over time, lymphoedema remains a significant concern for patients undergoing breast cancer surgery. Most advice aimed at minimising the risk of lymphoedema is largely unsubstantiated by evidence, often leading to unnecessary limitations on the affected limb that may adversely affect quality of life and survivorship. There is a paucity of data regarding patient perceptions of lymphoedema risk and the strategies they adopt to mitigate this perceived risk. Methods This study invited New Zealand patients who had undergone breast cancer surgery to complete an online questionnaire regarding their treatment history, perceived risk of lymphoedema, and whether they believed certain historical risk factors contributed to lymphoedema. Additionally, patients were asked whether they avoided any activities to reduce this perceived risk. Results A total of 683 valid responses were received. 77% of those who underwent sentinel node biopsy (SNB) and 72% of those who had axillary node dissection (AND) overestimated their risk of lymphoedema development. Risk‐reducing strategies (RRS) were adopted by 85.9% of individuals without a diagnosis of lymphoedema, with an average of 4.1 strategies per participant. Those who had undergone AND were more likely to adopt such strategies. Conclusion The majority of respondents overestimated their risk of lymphoedema and adopted RRS to mitigate this perceived risk, despite the absence of substantial evidence supporting these strategies.