17 August 2020

Last year, we asked the online breast cancer community to participate in a survey to assess experiences with endocrine therapy (ET). We are proud to announce that the study has now been published, in the Journal of Cancer Survivorship*.

First of all, I would like to thank all of the participants – we surpassed our accrual goals and this is the largest survey of ET use by patients who participate in online breast cancer communities! 

About the respondents:

  • 111 respondents did not start the recommended ET, and concern about side effects was the primary reason
  • Of those who took ET (2407), 2353 were women and 54 were men
  • Most of the women (74%) were post-menopausal
  • Mean age at diagnosis was 50 for women (range: 23-82) and 54 for men (range: 24-73)
  • Most (87%) were diagnosed at Stage 1-3
  • 100 (4.2%) were diagnosed with de novo Stage 4 / metastatic breast cancer
  • 12% of those diagnosed at an early stage eventually developed Stage 4 / metastatic breast cancer

Treatment:

  • Aromatase inhibitors (AIs) were the most commonly used medication
  • 91% of respondents reported at least one class of side effect that they felt was related to treatment (92% of women and 74% of men)
  • Musculoskeletal and general physical changes (such as weight gain and unhappiness with body image) were the side effects most commonly reported by women
  • Men most commonly reported sexual and cognitive / mood side effects
  • 33% (33% of women and 50% of men) discontinued therapy early
  • 9% reported that they took treatment breaks or discontinued therapy early either without informing their medical team or against their medical team’s advice

Side effect management:

  • 3 classes of side effect management strategies were felt to be most helpful:
    • Healthy diet, exercise, physical therapy
    • Complementary therapy such as yoga, acupuncture and meditation
    • Vitamins, supplements and herbs including medical marijuana 
  • Only 41% of respondents noted any relief from side effect management strategies

Medical team communication: (multiple responses permitted so this category did not add up to 100%)

  • 70% felt supported by their medical team in attempting to discuss side effects
  • 32% were made to feel that they should be better able to handle side effects or that the side effects were not related to treatment
  • 7% did not discuss side effects with their treatment team, feeling that there were more important issues to discuss, that there was not enough time, or they did not feel comfortable

Some other findings:

  • Respondents with early-stage and metastatic breast cancer reported similar side effects and management experiences, even though these two groups of patients have very different supportive needs
  • Men who responded to our survey were less likely to report side effects but more likely to discontinue therapy early compared to women – more information is needed about the experience of men with breast cancer and those taking endocrine therapy

Clearly, there is room for improvement in terms of medical team support and understanding. In addition, as only 41% of respondents noted any relief from side effect management strategies, we need more effective treatments for ET-related side effects. Thank you to all who participated in this survey! We are hopeful that your responses and comments will inspire researchers devote more time to addressing these important issues.

*If you are not able to access the full study and would like a copy, please email me: contact at drattai dot com