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Study: Breast cancer disparities among the LGBTQ+ community

Summary

This study looked at differences in breast cancer treatment outcomes among people from the LGBTQ+ community.  (Posted 6/28/23)

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Breast cancer disparities among the LGBTQ+ community

RELEVANCE

Most relevant for: People belonging to the LGBTQ+ community. It may also be relevant for:

  • people with breast cancer
  • transgender people

Relevance: Medium-High

Strength of Science: High

Relevance Rating Details


What is this study about?

The researchers wanted to know whether breast cancer treatment and outcomes differ among people from the LGBTQ+ community compared to people who are not from the LGBTQ+ community.

Why is this study important?

Research is scarce on whether exist in breast cancer treatment and outcomes among people from sexual and gender minority groups (people from the LGBTQ+ community). Information on sexual orientation and gender identity is not collected or analyzed in most hospitals or doctor’s offices.

The people studied in this research included (referred to below as sexual and gender minorities or SGM):

  • Lesbian women (women who are sexually or romantically attracted to women).
  • Bisexual women (women who are sexually or romantically attracted people of the same gender and other genders).
  • Transgender men (men who were assigned female at birth).

Key findings

Compared to heterosexual women, lesbians, bisexual women and transgender men facing breast cancer:

  • were diagnosed later.
  • were more likely to decline recommended treatment.
  • had higher rates of recurrence.

The researchers were able to show that these differences were not due to physical differences. Both groups had similar risk factors from hormones, such as age at first period, oral birth control or hormone replacement use.

These findings suggest that significant healthcare disparities exist among people with breast cancer in the LGBTQ+ community. The causes of these different outcomes likely arise from discrimination, such as how healthcare systems and society treat people from the LGBTQ+ community and how this discrimination affects their ability to get care.

The researchers suggest that one way for doctors to improve health outcomes for LGBTQ+ patients is to ask them about their sexual orientation and gender identity, and then record that information in the individual’s medical record. This would allow doctors to pay special attention to people from sexual and gender minority groups so that problems can be addressed quickly. It would also allow for discussion on the importance of guideline-recommended treatments.

Strengths and limitations

Strengths

  • Other than sexual orientation and gender identity, people in the two groups (SGM and non-SGM) were similar. The study was designed to limit differences other than sexual orientation and gender identity between the two groups. 

Limitations

  • The researchers used data.
  • Participants, who were mostly white and had a stable income, and do not represent all people from the LGBTQ+ community.  
  • The two groups had some racial and ethnic differences, and this may contribute to differences between the groups separate from SGM differences.

What does this mean for me?

If you are a member of the LGBTQ+ community, you are more likely to experience a delayed breast cancer diagnosis and a sooner recurrence compared to heterosexual women. It is important that you find a healthcare team that you trust and with whom you feel comfortable speaking about your breast cancer. This is the best way to assure that you receive the most appropriate breast cancer screening, prevention and treatment.  

Reference

Eckhert E, Lansinger O, Ritter V, et. al., Breast cancer diagnosis, treatment, and outcomes of patients from sex and gender minority groups. JAMA Oncology; 2023; 9: Article number 4. Published online February 2, 2023.

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 prior to publication to assure scientific integrity.

Share your thoughts on this XRAY review by taking our brief survey.  

posted 6/28/2023

Questions To Ask Your Doctor
Questions To Ask Your Doctor

  • Given my personal and family history, what kind of breast cancer screening should I have done and how often?
  • Are there preventive actions that I might consider to lower my risk of breast cancer?
  • I have had breast cancer, what treatments are recommended or not recommended.
  • What are the benefits and risks of alternative therapies for breast cancer treatment?
  • If I decide not to take anti-estrogen therapy, what are the risks and benefits?

Finding experts
Finding experts

The following resources can help people from the LGBTQ+ community find compassionate care.

Finding LGBTQ+-friendly care


Other ways to find experts

Updated: 04/09/2023

Open clinical trials
Open clinical trials

The following studies are enrolling people from the LGBTQ+ community. 

Visit our Featured Research Page and Research Search and Enroll Tool to find additional studies enrolling people with, or at high risk for cancer. Note: Most of these trials are geared towards people.

Updated: 05/30/2023

Peer support
Peer support

The following organizations offer peer support services for people from the LGBTQ+ community.

  • FORCE holds virtual support meetings organized by and for members of the LGBTQ+ community. Check our National Meetings page for the next scheduled meeting. 
  • The National LGBT Cancer Network offers cancer support group meetings.

Updated: 03/18/2023

IN-DEPTH REVIEW OF RESEARCH

Study background

Very little is known about the quality of breast cancer care among people from sexual and gender minority groups, in part because few clinics record patient data on sexual orientation or gender identity. In addition, the frequency of patients who disclose their sexual orientation and gender identity to their doctors varies widely and is likely influenced by a patient’s perception of safety in the clinic space, ease of disclosing their sexual orientation and gender identity in other spaces, as well as their age, race and ethnicity.

Because no data has been established on treatment quality and outcomes among breast cancer patients from sexual and gender minority groups, a National Academies report in 2020 called for adding sexual orientation and gender identity to data collected in clinics.  This study is an initial analysis of some of this newly collected data.

Researchers of this study wanted to know

The researchers wanted to evaluate the quality of breast cancer treatment and the frequency of breast cancer recurrence among people from sexual and gender minority (SGM) groups compared to their heterosexual counterparts.

Populations looked at in this study

The study population included 92 patients from SGM groups who were treated for breast cancer at Stanford University between January 1, 2008, and January 1, 2022. The median age at diagnosis was 49 years. Most of the patients were (80.4%) or white (73.8%) lesbians. Identities other than lesbian women included bisexual women (12%), heterosexual transgender men (4.3%), one asexual transgender man (1.1%) and one gay transgender man (1.1%).

Most participants were white. The second most prevalent ethnic group was Latine (13%). A few people were from other ethnic groups, which included Asian or Pacific Islander (3.3%) and Black (2.2%). Two people (2.2%) did not report their ethnicity.

The study took socioeconomic status (SES) into account by looking at data on the participants' sources of medical insurance and residential address. Participants were mostly affluent: 63 percent were in the top two SES groups according to their mailing address. Most participants (66.3%) had private health insurance.

Participants in the SGM group:

  • were less likely to have undergone childbirth (17% compared to 64% in the group of heterosexual women)
  • were less likely to have children (typically no children compared to an average of 2 children in the group of heterosexual women).
  • had higher alcohol use (13% compared to 4.3% in the group of heterosexual women).
  • had higher cannabis use than the control group (25% compared to 7.6% in the group of heterosexual women).
     

Participants in both groups had many similar hormonal risk factors:

    • age at first menstrual period
    • age at first delivery
    • menopausal status
    • use of oral birth control pills
    • use of hormone replacement therapy
       

Both groups had similar rates of coronary artery disease, diabetes and obesity.

Study design

The researchers used a case-control study design. The 92 people from an SGM group (the study group) were matched to 92 heterosexual women who had breast cancer during the same time period as the SGM participant  and were treated at Stanford University or other Northern California hospitals. The two groups were matched by age within five years, year of breast cancer diagnosis within seven years and tumor characteristics (exactly matched for tumor , receptor status and receptor status).

Researchers looked at specific quality of care indicators: missed screening, appropriate genetic testing and surgery received (mastectomy or ). The researchers also noted whether the patient received the following recommended therapies as indicated by their diagnosis:

  • chest or breast reconstruction after mastectomy
  • radiation therapy after
  • chemotherapy prior to surgery for III breast cancer
  • anti-estrogen therapy (for example, tamoxifen, Arimidex) for 5 years if a diagnosis was receptor-positive cancer
  • therapy for breast cancer (for example, Herceptin)

In addition, the researchers collected data on patients who declined their recommended therapy.

Study findings

Both groups had the same median age at breast cancer diagnosis (49 years) and similar SES and health insurance types. The groups included different racial and ethnic representations: The heterosexual group had fewer white patients (63% vs 74%), fewer Hispanic people (7% vs. 13%) and more Asian or Pacific Island people (25% vs. 3%). 

Researchers looked at whether factors related to medical history and health-related behaviors influenced breast cancer outcomes.

Breast cancer diagnosis was delayed

People in the SGM group with breast cancer symptoms (for example, a breast lump) experienced more frequent delays in breast cancer diagnosis compared to people in the heterosexual group. The median time from symptom onset to diagnosis was 64 days in the SGM group and 34 days in the heterosexual group. This difference could not be explained by ethnicity, SES or insurance type. Both groups had breast cancer screening with similar frequency.

Many aspects of cancer care were similar

No differences were found between the two groups in rates of:

  • diagnosis based on breast cancer symptoms (e.g., breast lump) or diagnosis based on screening results
  • genetic testing referral
  • clinical trial engagement
  • time to first treatment
  • mastectomy or for localized disease (i.e., the patient was offered a choice of surgery)
  • radiation therapy after
  • chemotherapy prior to surgery for III disease
  • Her2-directed therapy (e.g., Herceptin)

Therapy choices differed

Participants in the SGM group were more likely to decline therapy that was recommended by an oncologist.

  • Anti-estrogen therapy was declined more often than other therapies.
  • SGM participants who started anti-estrogen therapy did not typically complete a full five years of hormonal therapy; however, this was not significantly different from the heterosexual group. It is not clear if the difference in the completion rate of hormonal therapy was due to provider behavior, patient adherence to taking daily pills or intolerable side effects. Since the difference was not statistically significant, it may have been due to chance.
  • The SGM group was more likely to use alternative medicines compared to the control group (46% vs. 30%).

Recurrence occurred more frequently

Recurrence outcomes were significantly different, with higher rates of breast cancer recurrence in the SGM group.

Compared to the heterosexual group, the SGM group:

  • more frequently had a cancer recurrence (32.2% compared to 13.3% in the heterosexual group).
  • more frequently had a local recurrence—in the same breast or near the surgery scar after mastectomy (17.3% compared to 2.5% in the heterosexual group).
  • more frequently had a recurrence—breast cancer outside the breast and not near the mastectomy scar (24.7% compared to 13% in the heterosexual group).
  • had two participants with IV breast cancer at the time of diagnosis (the same as the heterosexual group).

The difference in recurrence rates could not be explained by differences in race or ethnicity, SES or insurance type.

Strengths and limitations

Strengths

  • Other than sexual orientation and gender identity, the study minimized the differences between the GSM group and the non-GSM group as much as possible to focus analysis on those issues.
  • The patients were treated for breast cancer in the same geographic area during the same time frame, so differences in treatment and outcomes between the groups were unlikely to be due to regional differences or differences in the standard of care.

Limitations

  • The differences in race, ethnicity and hormonal risk factors (e.g., childbearing) between the groups may have contributed to differences between the groups that are not explained by their SGM status.
  • Since the study was conducted in only one region of the U.S., and most of the participants were white and affluent, the study results are less likely to be generalizable to other places and to more diverse populations.   

Conclusions

Breast cancer patients from SGM groups are a high-risk population. The reasons the SGM group experienced a longer time to diagnosis and higher breast cancer recurrence rates were most likely due to discrimination within the healthcare system and social stigma, rather than biological differences (e.g., hormonal factors) or other factors that increase risk. The magnitude of the difference in diagnosis delay and recurrence rates is much greater than the differences in the groups’ underlying risk factors.

Historically, researching in the SGM population has been challenging because sexual orientation and gender identity were largely undocumented. While avoiding care due to a distrust of the healthcare system may partly explain the delayed diagnosis SGM people experienced, another possible cause is the failure of the healthcare team to adequately evaluate symptoms in SGM patients. Patients’ past experiences with healthcare discrimination may have resulted in distrust of the healthcare system. This may have resulted in the SGM group’s higher rates of declining recommended therapy and increased use of alternative medicines, and ultimately, worse breast cancer outcomes.  

Share your thoughts on this XRAY review by taking our brief survey.
posted 6/28/2023

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