The lived experience of breast cancer patients on adjuvant endocrine therapy: Side effects and coping strategies during the first year of medication initiation

Abstract Purpose Breast cancer in women is the most commonly diagnosed cancer. Adjuvant endocrine therapy (AET) showed consistent improvements in recurrence and survival rates. Adherence to adjuvant endocrine therapy remains essential for improving overall survival in women with hormone receptor (HR) positive breast cancer. However, early discontinuation of medicine is reported to range from 20% to 50%. Poor adherence has been attributed to multiple factors including presence of adverse events. We aim to report the lived experience of breast cancer survivors specifically as regards to side effects, the most reported reason for lack of adherence. Methods 35 breast cancer survivors on AET were interviewed. Qualitative iterative analysis was conducted using the grounded theory approach with the goal of identifying themes that emerge from the interviews and refining the question probes as needed. A codebook was developed and supplemented with interpretive codes generated through ongoing analysis of transcripts. All transcripts were coded using NVIVO qualitative data analysis software for data interpretations. Results Reported side effects associated with AET medications include hot flashes, sexual side-effects, joint pain, stiffness, cognitive function, mood changes, bone mass density decrease and fertility concerns. Women who were on AET more than 6 months reported more side effect concerns. A variety of coping strategies using over the counter medications or alternative medicines and approaches were also discussed. Conclusion Tailored and timely information on potential AET-induced side effects and strategies to manage them is needed. In particular, some side effects are more prevalent by medication (e.g., joint pain in those who were taking an aromatases inhibitor). Provision of information to prepare women for the potential side effects of type of AET they are prescribed for would be helpful. Implications for Cancer Survivors As AET has been suggested for 10 years to improve surveillance and reduce recurrence, our results have implications for cancer survivors, especially the onsets of side effects and potential ways to manage them as they arise.