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2 November 2020

Endocrine therapy is a key component of breast cancer treatment for those with both early stage and metastatic hormone receptor-positive disease. However, side effects can be significant, and many patients do not complete recommended therapy. Our recent study* showed that over 90% of women and men prescribed endocrine therapy experience treatment-related side effects, and approximately 30% discontinue treatment early. 

Musculoskeletal issues such as bone pain, joint pain and stiffness, and bone loss (osteopenia and osteoporosis) are among the most common side effects related to aromatase inhibitors (AIs). A recent review by Gupta et al* discussed several side effect mitigation strategies and the evidence behind them. The most effective included exercise including yoga, acupuncture, duloxetine (brand name Cymbalta), treatment breaks, changing to a different AI, or changing from an AI to tamoxifen.

In my accompanying editorial*, I noted that there are barriers to successfully managing side effects, including cost, access and adherence to structured exercise programs and acupuncture, reluctance to add a new medication which comes with its own side effects, and anxiety regarding treatment breaks both on the part of the patient and their oncologist. In addition, none of the side effect treatments have been found to be universally effective. In fact, in our survey, only 41% of respondents noted that any side effect management was effective.

Clearly a new approach is needed, focusing on open and active communication between the patient and his or her oncologist. Endocrine therapy is often the “last” phase of breast cancer treatment, and patients may not remember conversations held at the time of diagnosis regarding benefits and side effects of endocrine therapy. Re-visiting the role of endocrine therapy, along with associated side effects and management techniques should occur before treatment. The absolute benefits of treatment should be clearly discussed – statements such as “this will reduce your risk of recurrence by 50%” are not meaningful unless a patient understands what her absolute risk of recurrence is – are we trying to reduce a 50% recurrence risk down to 25% or a 5% recurrence risk down to 2.5%? 

Common and expected side effects, such as bone and joint pains, hot flashes, cognitive dysfunction (commonly termed “chemo-brain”) and impact on sexual function should be discussed, along with the evidence-based strategies to help manage these symptoms. In our study, patients noted that peer support (such as an in-person or virtual support group) as well as a website that provided clear information about side effects and management would be helpful, but these were not often provided. Patients also noted that an in-person or virtual visit with their physicians to discuss side effects would be helpful – this should ideally occur within 4-6 weeks of treatment initiation so that issues and concerns can be promptly addressed. 5-10 years is a long time to take a medication that is having a significant impact on quality of life – it is important that patient concerns are heard and addressed at every visit. 

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

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

9 November 2017

In patients with a common form of breast cancer, known as estrogen receptor (ER) “positive”, endocrine therapy is often recommended after other treatments such as surgery, chemotherapy, and radiation are complete. Tamoxifen, most commonly used in pre-menopausal women, blocks the estrogen receptor on the breast cell, so estrogen cannot impact cell growth. In post-menopausal women, aromatase inhibitors (AI) are commonly used – these medications block the production of estrogen in the fat cells – a primary source of estrogen after menopause. Historically, these medications have been used for 5 years after completion of other treatment, although there are some studies suggesting longer courses may benefit certain patients. However, longer courses of therapy are associated with a higher incidence of side effects.

A study just published in the New England Journal of Medicine demonstrated that after 5 years of endocrine therapy, patients have an increasing risk of breast cancer recurrence with long term follow up. The authors evaluated individual patient data from a large database of randomized trials. They found that in patients with stage I tumors (tumor less than 2 centimeters and no lymph node involvement) the 20 year risk of recurrence was approximately 13%. In patients with 4-9 involved nodes, the risk ranged from 34-41% depending on the size of the main tumor.

This study is important as it confirms what many of us see in our practices – that breast cancer can and does recur, even many years after therapy. However, it also raises an important discussion point about our treatments. Studies have estimated that as many as 30% of women prescribed endocrine therapy stop treatment due to side effects which significantly interfere with quality of life such as menopausal symptoms, bone and joint pains, bone loss (osteoporosis) and fracture, and mental status changes (“chemobrain”). Patients should discuss any of these symptoms, especially if they are considering stopping their medication, with their physicians. Lifestyle changes, exercise programs, and medications may be of benefit. It is also important to understand that despite all appropriate treatment, cancer can and does come back – so health maintenance and surveillance are important even long after cancer therapy has ended.