Health

Study: How breast cancer patients experience hormone therapy

Summary:

Side effects from hormone therapy are a common reason that many men and women with hormone receptor-positive breast cancer stop treatment early. Some people never start hormone therapy. This study asked patients about their experiences with hormone (or endocrine) therapy. The results suggest that there may be ways to improve the number of patients who stick with therapy. Patients need better ways to manage hormone therapy-related side effects. (1/19/21)

Relevance:

This article is most relevant for Breast cancer patients considering hormone therapy

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This article is relevant for:

Breast cancer patients considering hormone therapy

This article is also relevant for:

  • Breast cancer survivors
  • ER/PR +
  • Men with breast cancer
  • Newly diagnosed
  • People with metastatic or advanced cancer
  • Women under 45
  • Women over 45

Contents

At a glance
Study findings
Study results
Strengths and limitations
What does this mean for me?
Study details
Questions to ask your provider
Clinical Trials
Related resources and references
Expert guidelines
Relevance Rating Details

STUDY AT A GLANCE

This study is about:

Understanding why patients stop taking hormone therapy for breast cancer treatment.

Why is this study important?

Most invasive breast cancers (those that have spread to the surrounding breast tissue) are hormone receptor-positive (ER/PR-positive). Hormone therapy, also called endocrine therapy, can be an important part of treatment for patients with hormone receptor-positive breast cancer. Hormone therapy reduces the risk of cancer returning and may improve overall survival. However, many patients who are prescribed hormone therapy do not begin or complete treatment. This study looked at the reasons behind these decisions.

Study findings

Study design and purpose

This is the largest survey of hormone therapy use among online patient populations. Participants completed a survey that asked them why they did not begin treatment. If they began treatment, the survey asked patients to describe side effects and how they managed them. It also asked about how a patient’s relationship with their doctor impacted their decision to continue or discontinue hormone therapy.

Study results

  • Of the 2,518 respondents, 111 (4%) reported that hormone therapy was recommended but that they did not begin treatment.
    • The primary reason was due to concerns about potential side effects. Other reasons included:
      • the impact of hormone therapy on overall health.
      • belief that the perceived benefits did not outweigh the risks.
      • concerns about the risk of secondary cancers.
      • not wanting to take prescription medications.
      • cost.
  • Of the 2,407 participants who began treatment, 2,353 were women and 54 were men.
    • 722 (31%) of women and 27 (50%) of men stopped hormone therapy early.
  • Most participants 2,194 (91%) reported side effects related to hormone therapy.
    • Side effects were reported more often by women (92%) than men (75%).
    • Participants shared what helped them manage related side effects. These included:
      • a healthy diet, exercise and physical therapy.
      • other complementary therapies such as yoga, acupuncture and meditation.
      • vitamins, other dietary supplements and herbs, including medical marijuana.
  • About a third of the participants 642 (31%) said that their hormone therapy side effects were not taken seriously by their healthcare providers.
  • When patients were asked how their healthcare providers supported them and helped them manage side effects, responses included:
    • referral to a website with information about side effects and how to manage them.
    • specific office visits (in person or virtual) to discuss side effects.
    • access to an oncology social worker.
    • peer support.
    • an app that tracks side effects and reports them to healthcare providers.
    • access to a financial counselor.

Strengths and limitations:

Strength:

  • This study included many respondents. Most were in their first 5 years of hormone therapy.

Limitation:

  • Because this survey was distributed on social media and in an electronic new letter, the results do not include participants who did not have internet access. This may have led to a bias if those with internet access who chose to respond to the survey differed from people without internet access or who choose not to respond.  The results may not reflect the experiences of all patients taking hormone therapy.

What does this mean for me?

Most breast cancer patients who begin hormone therapy report some side effects related to treatment. In this study, only about 40 percent of participants reported relief from side effects. This suggests that more research is needed to identify ways for patients to successfully manage hormone therapy side effects.

Because many people did not feel that their therapy side effects were taken seriously by their healthcare providers, this study suggests that improved communication between healthcare providers and their patients is important. Patients suggested that a visit with their doctor to discuss the benefits of continued hormone therapy, the risks of stopping early and ways to manage side effects during therapy would be beneficial.

If you have been prescribed hormone therapy, you may want to talk to your doctor about potential side effects and ways to deal with them. If you experience side effects, speak to your doctor about them, and ask for suggestions on the best ways to cope with side effects.

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Expert guidelines

The National Comprehensive Cancer Network (NCCN) is a national panel of experts that creates guidelines for cancer treatment. NCCN recommends the following for patients diagnosed with hormone receptor-positive breast cancer:

For women:

  • Consider hormone therapy for 5 years.
    • Tamoxifen is recommended for premenopausal women.
    • Tamoxifen or an aromatase inhibitor is recommended for postmenopausal women.
  • Women who are on tamoxifen and still have a uterus should have a gynecologic exam every 12 months.
  • Women who are on an aromatase inhibitor who have ovarian failure due to this medication should have bone density tests.

For men:

  • Consider hormone therapy for 5 years with either tamoxifen or an aromatase inhibitor.
    • Men who are on an aromatase inhibitor should also take treatment to block testosterone.

The NCCN also recommends that patients keep a copy of all their test results and medications that they currently take or have taken in the past. (Online patient portals are a great way to access test results and prescribed medications.) Having this information available can come in handy, especially if a second opinion is necessary.

The American Society of Clinical Oncology (ASCO) is a professional organization representing physicians of all oncology subspecialties who care for people with cancer. ASCO’s updated 2019 guidelines on hormone therapy for breast cancer treatment include:

  • Extending hormone therapy from 5 to 10 years has ongoing risks and side effects. These should be weighed against the potential benefits of longer treatment in a shared decision-making process between the clinical team and the patient.
  • Many women with node-negative breast cancer are potential candidates for and may be offered aromatase inhibitor therapy for up to 10 years.
  • Women with node-positive breast cancer should be offered aromatase inhibitor therapy for up to 10 years.
  • Women who receive extended hormone therapy should receive no more than 10 years of total treatment.

Questions to ask your doctor

  • What types of side effects can I expect with hormone therapy?
  • What should I do if I experience side effects from hormone therapy?
  • Are there alternative treatments to hormone therapy?
  • How much more benefit would I receive if I continue hormone therapy beyond the recommended 5 years?

Open Clinical Trials

IN-DEPTH REVIEW OF RESEARCH

Study background:

Hormone therapy is an important part of treatment for many patients with hormone receptor-positive breast cancer. For early-stage breast cancer patients, adjuvant hormone therapy may reduce the risk of local and distant recurrence. Current guidelines recommend that hormone therapy be continued for 5 years. However, recent research indicates that patients benefit from continuing adjuvant hormone therapy for up to 10 years (see Guidelines). Hormone therapy is also a common part of treatment for patients who are diagnosed with metastatic hormone receptor-positive breast cancer.

Despite the known benefits of hormone therapy, many breast cancer patients either do not begin therapy or do not complete treatment due to concern about side effects. Not beginning treatment or stopping it early is known to increase breast cancer-related deaths and associated medical costs.

Researchers of this study wanted to:

Understand why patients do not begin hormone therapy, to describe side effects and how patients manage them, and understand how healthcare providers impact patient adherence to hormone therapy.

Populations looked at in this study:

More and more breast cancer patients participate in online groups where they find support and often discuss medical care, particularly treatment side effects and healthcare providers’ attitudes. The researchers tapped into this online community to gather data.

Study design:

Advocates were closely involved in the study design. Nine patient advocates (6 women and 3 men) contributed to the study design. They were selected based on their personal breast cancer history, hormone therapy use, advocacy and research experience, and participation in online breast cancer groups.

Advocates and medical experts designed a novel survey of 33 questions based on decision-making and decision needs regarding hormone therapy. A link to the survey was posted on the personal blog, Facebook and Twitter accounts of the senior author (FORCE advisory board member, Deanna Attai, MD) and was shared by the Dr. Susan Love Research Foundation Army of Women email newsletter and social media accounts. The researchers relied on those who were interested to share the survey with others. The survey was open from May 12, 2019 to July 14, 2019.

Study findings

Of the 2,518 respondents, 111 (4%) reported that they did not begin hormone therapy that was recommended.

The primary reason reported was concerns about potential side effects. Other reasons included:

  • the impact of hormone therapy on overall health.
  • a belief that the perceived benefits did not outweigh the risks.
  • concerns about the risk of secondary cancers.
  • not wanting to take prescription medications.
  • cost.

Of the 2,407 participants who began treatment, 2,353 were women and 54 were men. Aromatase inhibitors were the most common treatment, followed by tamoxifen. Of participants who began treatment:

  • 2,194 (91%) reported side effects related to hormone therapy.
    • Side effects were more often reported by women than men. These included:    
      • cardiovascular issues
      • cognitive/mood changes
      • eye problems
      • general physical changes
      • gastrointestinal (stomach and digestive tract) problems
      • genitourinary (genital and urinary organs) issues
      • muscle/skeletal changes
      • sexual complications
      • vasomotor (blood vessels) changes
      • the high cost of medication
  • 799 participants (33%) stopped taking hormone therapy before completing the entire regimen. 
    • This included 722 (31%) of the women and 27 (50%) of the men.
      • 213 (9%) of all participants who began hormone therapy reported that they took a break from treatment or stopped treatment early, either against the advice of their healthcare providers or without telling their healthcare providers.
         
  • 642 participants (31%) said that their hormone therapy side effects were not taken seriously by their health care providers.
    • This does not include the 145 patients (7%) who reported side effects but did not discuss or attempt to talk to their healthcare providers about them.
       
  • When patients were asked what information their healthcare providers shared with them to support them and help them manage side effects, responses included:
    • referral to a website with information about side effects and how to manage them.
    • specific office visits (in person or virtual) to discuss side effects.
    • access to an oncology social worker.
    • peer support.
    • an app that tracks side effects and reports them to health care providers.
    • access to a financial counselor.
  • Participants reported on what helped them manage side effects from hormone therapy. These included:
    • a healthy diet, exercise and physical therapy.
    • other therapies such as yoga, acupuncture and meditation.
    • vitamins, other dietary supplements and herbs, including medical marijuana.

Strengths and Limitations:

Strength

  • The survey was designed with significant patient input.  
  • This study included many respondents. Most were in their first 5 years of hormone therapy. Thus, these reflect current, modern-day patient experiences of taking hormone therapy. This also reduces the likelihood of survey.

    Rating Details:

    Relevance: Medium High

    • This research is relevant for breast cancer patients who are prescribed hormone therapy.  It is not relevant for every patient diagnosed with breast cancer.
    • Study participants had access to the internet where they openly discussed their treatments and concerns. These results may not reflect the experiences of all patients prescribed hormone therapy.

    Scientific Strength: Medium High

    • This is a well-designed study that looked at how breast cancer patients experience hormone therapy.
    • The researchers included patients advocates in the development of the survey.

    Research Timeline: Human Research

    • It is well known that many breast cancer patients experience side effects from hormone therapy.  However, more research is needed to understand what tools patients need to manage side effects and communicate concerns to healthcare providers.