How patients experience endocrine therapy for breast cancer: an online survey of side effects, adherence, and medical team support

Abstract

Purpose Many patients with hormone receptor-positive (HR+) breast cancer do not adhere to endocrine therapy (ET), and treatment-related side effects are often discussed by participants in online breast cancer forums. Our aim was to survey this unique group of patients about their ET-related experiences. Methods We partnered with patients active in breast cancer social media communities to develop a survey assessing ET-related side effects and medical team communication. Patients with a history of HR+ breast cancer who had received a recommendation to take ET were eligible to participate in the anonymous, online survey. Results Respondents included 2353 women and 54 men. Aromatase inhibitors were the most commonly used medication. Side effects were reported by 91.2%, were more often experienced by women than men (p < 0.001), and were primarily related to medication type. Approximately one-third of respondents discontinued therapy early. While most felt supported by their medical team, 31.5% reported that their side effects were dismissed or minimized. Survey respondents most frequently reported that a healthy diet and exercise, yoga/acupuncture, and vitamins/supplements were helpful in managing ET-related side effects. Conclusions ET-related side effects are very common, and one-third discontinued treatment early. Lifestyle changes and complementary therapies can be important tools for side effect management. One-third of patients did not feel that their side effects were taken seriously. Implications for Cancer Survivors This is the largest survey of ET use by participants in online breast cancer communities. Further research is needed to identify strategies to improve treatment adherence and to better manage ET-related side effects.

Estrogen receptor alpha in the brain mediates tamoxifen-induced changes in physiology in mice

“…If translatable to humans, our findings suggest the hypothesis that tamoxifen treatment may alter thermoregulation, physical activity, and bone through ERα signaling in the brain. A recent survey conducted in the online breast cancer communities showed that women often experienced more of tamoxifen’s side effects than men and one-third of patients did not feel that their side effects were taken seriously ( Berkowitz et al, 2021 ). The insights provided here are a first step toward the development of alternative or improved treatments that mitigate or circumvent some of the undesirable side effects of tamoxifen therapy.…”

“…These responses markedly impact quality of life. Accordingly, ~25% of eligible patients fail to start or complete this life-saving therapy due to side effects and safety concerns ( Friese et al, 2013 ; Berkowitz et al, 2021 ). The tissues and cells that mediate these negative side effects remain unclear.…”

Patterns of Sequelae in Women with a History of Localized Breast Cancer: Results from the French VICAN Survey

“…In previous studies, chemotherapy and hormone therapy were associated with functional and fatigue sequelae [ 4 , 46 , 47 , 48 ] and patients who experienced such sequelae were mostly younger. Hormone therapy has improved the survival of patients with breast cancer but induced many sequelae that impact quality of life, social interaction, and the everyday life [ 49 , 50 , 51 ]. Patients are faced with menopause and its associated symptoms (hot flashes, sleeping difficulties, gynecological complications) [ 52 , 53 ].…”

“…Sequelae of hormone therapy have been often underestimated whereas the effects can compromise its long-term adherence [ 49 ]. A study with 2353 women with breast cancer showed that one-third of women did not feel supported by the medical team to overcome sequelae [ 51 ]. These results underline the need for early detection of sequelae and better support for patients.…”

Incorporating Clinical Evidence Into Clinical Practice: Management of Aromatase Inhibitor–Induced Musculoskeletal Symptoms

“…Patients may prefer a dedicated office visit (in person or telehealth) for this purpose. 6 At a minimum, because of the potential for aromatase inhibitor-induced acceleration of bone loss, patients should be encouraged to walk, strength train, and engage in other physical activity on a regular basis. If appropriate, physical therapy referral before aromatase inhibitor treatment may help to address limitations in movement, strength, and balance.…”