Purpose Breast cancer related lymphoedema (BCRL) can occur following surgical treatment of breast cancer. Advancement of surgical technique has decreased the risk of BCRL. It remains a feared complication and many patients adopt risk reducing strategies (RRS) to decrease risk, most are not evidence based. The aim of this study was to assess patient perceptions of the risk of BCRL, identify perceived risk factors and determine how frequently these were avoided. Methodology New Zealand patients who had surgical management of breast cancer were invited to complete an online survey distributed by several breast cancer charities. Data included demographics, surgery type, adjuvant treatment, patient estimated risk of BCRL development. Patients indicated if they thought certain activities increased BCRL risk and if they avoided any of these. Results 683 valid responses were received. 40.7% reported a diagnosis of BCRL. Those who had sentinel node biopsy (SNB), 77% overestimated their risk of BCRL. Those who had axillary node dissection (AND), 72% overestimated their risk of BCRL. 85.9% of those without BCRL adopted one or more RRS, with an average of 4.1 RRS adopted. 84.0% of those who had SNB without a diagnosis of BCRL adopted at least one RRS, with an average of 3.8 adopted. 99.1% of those who had AND without a diagnosis of BCRL adopted at least one RRS, with an average of 5.7 adopted. Conclusion Most patients overestimated their risk of developing BCRL and adopted risk reducing behaviours to mitigate this perceived risk. All bar one of the RRS surveyed are not supported by evidence and unduly restrict use of the arm potentially impacting on survivorship.