Study: How breast cancer patients experience hormone therapy
Contents
At a glance | Study details |
Study findings | Questions to ask your provider |
Study results | Clinical Trials |
Strengths and limitations | Related resources |
What does this mean for me? | Expert guidelines |
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 (). 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.
- 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.
- The primary reason was due to concerns about potential side effects. Other reasons included:
- 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.
Read our related blog post: Why so many of us quit taking Tamoxifen.
Share your thoughts on this XRAY article by taking our brief survey
posted 1/19/21
Reference
Berkowitz MJ, Thompson CK, Zibecchi LT, Lee MK, Streja E, Berkowitz JS, Wenziger CM, Baker JL, DiNome ML, Attai DJ. How patients experience endocrine therapy for breast cancer: an online survey of side effects, adherence, and medical team support. Journal of Cancer Survivorship. Published online August 17, 2020.
Disclosure
FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board before publication to assure scientific integrity.
This article is relevant for:
Breast cancer patients taking or considering taking hormone therapy
This article is also relevant for:
people with breast cancer
people with ER/PR + cancer
men with breast cancer
people newly diagnosed with cancer
people with metastatic or advanced cancer
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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 breast cancer patients, 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 hormone therapy for up to 10 years (see Guidelines). Hormone therapy is also a common part of treatment for patients who are diagnosed with 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
- Side effects were more often reported by women than men. These included:
- 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.
- This included 722 (31%) of the women and 27 (50%) of the men.
- 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
Strengths:
- 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 (when past events are remembered incorrectly).
- The population studied openly discussed their healthcare and related experiences in online forums.
Limitations:
- As with any survey, results are likely biased by those who responded. These participants may be more likely to share their experiences. As such, they may not reflect the experiences of other patients about hormone therapy.
- Participants in this study were more likely to be white women who are younger, college educated and of higher socioeconomic status than the general population. The findings of this study may not apply to a diverse population that is more representative of the US population.
- The researchers do not know if participants stopped treatment early because of the severity of their side effects, their ability to manage side effects or other reasons.
Context
While this study found that most participants understood the goals of hormone therapy, this understanding was not correlated with patients who were starting or continuing therapy. Understanding the importance of hormone therapy may not enough to ensure that patients begin and continue therapy given that most of them experience side effects that impact quality of life.
Conclusions
Most breast cancer patients who begin hormone therapy have treatment-related side effects. The majority of patients did not experience relief from these side effects. This suggests that more effective tools to manage side effects and strategies to communicate these concerns to healthcare providers are needed.
Share your thoughts on this XRAYS article by taking our brief survey.
posted 1/19/20
- 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?
The following studies are looking at management of side effects:
Multiple cancers
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- NCT05056077: Tools to be Fit. This is a quality of life study for people with bladder, breast, colon, endometrial, kidney (renal cell carcinoma), ovarian, , or rectal cancer to figure out what tools work best for helping cancer survivors improve their diet and exercise.
- NCT03996265: Bupropion in Reducing Cancer Related Fatigue in Cancer Survivors. This will study how well the drug bupropion (welbutrin) reduces cancer-related fatigue in cancer survivors.
Breast cancer
- NCT04621721: Physical Activity at Home for Relief from Neuropathy Caused by Taxanes in People with Breast Cancer. This study will look at the effects of gain and balance training and resistance exercise (using bands) on gait, balance, and lower extremity muscle strength after a 16-week home-based exercise program compared to educational materials without an exercise program.
- NCT04586530: Telehealth and Memory Study (TAMS). The overall purpose of this trial is to confirm the effectiveness of Memory and Attention Adaptation Training (a cognitive-behavioral therapy) as a treatment for chemotherapy-related dysfunction among breast cancer survivors.
- NCT02290834: Chemotherapy-induced and brain changes in older adults with breast cancer. The study will investigate abilities and brain images before and after chemotherapy to identify people at risk for side effects and to better understand the effects of treatment on brain structure and function.
- NCT04906200: Web-Based Symptom Monitoring and Self-Management Portal for Adolescent and Young Adult Breast Cancer Survivors. This compares a web-based patient-reported symptom-monitoring and self-management portal to standard therapy in young breast cancer survivors.
- NCT04837820: The Effect of Acupuncture on Cancer-Related Difficulties. This study will test whether acupuncture can improve thinking and insomnia in breast cancer survivors. This study will also look at insomnia's link to difficulties.
- NCT03879629: TrAstuzumab Cardiomyopathy Therapeutic Intervention With Carvedilol (TACTIC). Breast cancer patients receiving Herceptin or other HER2-directed therapy are at risk of heart damage. This study is looking at whether beta-blocker drugs could help prevent this from happening.
Colorectal cancer
- NCT05239338: Preserving Fertility After Colorectal Cancer Study (PREFACE). The PREFACE Study is a study of reproductive health and clinical outcomes among individuals diagnosed with colorectal cancer between age 18 to 49 years.
- NCT06420726: Resistance Exercise and Creatine in Colorectal Cancer. This study aims to assess the feasibilty of combining creatine supplementation with resistance training versus resistance training alone in colorectal cancer survivors.
Ovarian cancer
- NCT04533763: Living WELL: A Web-Based Program for Ovarian Cancer Survivors. This studies a group-based and web-delivered tool for ovarian cancer survivors in increasing quality of life and decreasing stress, depressive mood, anxiety, and fatigue across a 12-month period.
- NCT05047926: Prehabilitation for Advanced Ovarian Cancer Patients. Prehabilitation may improve peri-operative outcomes in patients undergoing cancer surgery. This study will look at structured activity for women undergoing chemotherapy to improve their physical state prior to surgical intervention and thus improve outcomes.
cancer
- NCT03971591: Men Moving Forward: A Lifestyle Program for African-American Cancer Survivors (MMF). This study will look at Men Moving Forward (MMF), a community-based lifestyle intervention that supports adherence to nutrition and physical activity guidelines to promote improved body composition and lessen the side effects of treatment.
- NCT05155501: Pelvic Fascia spARing Radical Prostatectomy TrIAL (PARTIAL). This clinical trial is studying whether pelvic fascia-sparing radical prostatectomy has similar cancer control and sexual function outcomes; and significantly better urinary function, less penile deformity and inguinal hernia risks as compared to radical prostatectomy.
Updated: 08/28/2024
The following organizations offer peer support services for people with, or at high risk for breast cancer:
- FORCE peer support:
- Our Message Boards allow people to connect with others who share their situation. Once you register, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Connect online with our Private Facebook Group.
- Join our virtual and in-person support meetings.
- Other organizations that offer breast cancer support:
Updated: 05/07/2024
Who covered this study?
Cancer Therapy Advisor
How breast cancer patients really feel about endocrine therapy This article rates 5.0 out of 5 stars