Why gender matters in breast cancer care

Clear communication between patient and provider is needed to ensure appropriate care. Healthcare is best when patients can effectively talk and be heard by their provider and feel safe disclosing relevant details that may impact their situation (9-11). Unfortunately, we know that many people, especially LGBTQIA+ people, don’t have access to high-quality care or feel safe disclosing relevant details with their providers (12-14). Guidance for providers on best practices for cancer care for gender-diverse patients is sparse but emerging (15-18).

To improve the quality of care and quality of life of LGBTQIA+ people impacted by cancer, Facing Our Risk of Cancer Empowered (FORCE) and Living Beyond Breast Cancer (LBBC) conducted a survey of healthcare provider, policy, and advocacy organizations to learn about respondents’ preparedness to serve gender and orientation minorities, as well as their needs for training to serve these priority populations. See the link for detailed Gender Inclusion survey results.

A total of 153 people representing organizations that serve people with breast cancer, including hospitals and healthcare provider, non-profit or advocacy organizations, and public health agencies, responded to the survey from March to September 2023. The complete survey illustrates that there is much work to do to ensure every person facing a breast cancer diagnosis gets the care they need—and deserve.

Collection and use of pronouns and other gender information is uneven

Pronouns represent how people self-identify. Using an individual’s indicated pronouns shows respect and validation of lived experiences. Failure to use indicated pronouns signals a general disrespect and may be alienating, disrupt communication, and create a barrier to appropriate healthcare. Asking about pronouns is the first step in appropriately addressing patients. Depending on outward appearance, voice or names can be misleading, regardless of a person’s gender.

Most (80-99 percent) of respondents said they are at least somewhat familiar with terms, such as assigned sex at birth, cisgender, gender, genderfluid, genderqueer, non-binary, and transgender. The majority were familiar with all except two-spirited, a term used by some indigenous populations (41% were very or somewhat familiar). However, in addition to two-spirit, genderfluid, genderqueer, and cisgender were less familiar to 15-20 percent of respondents.

Still, a minority of organizations consistently collect information on pronouns or other gender information. On the upside, nearly half of the organizations that do collect pronouns at least some of the time also ask for additional information about gender, such as sex assigned at birth.

Organizations collected pronouns or other gender information in a variety of overlapping ways:

• 75% by electronic records
• 27% during appointments
• 26% via patient portals
• 10% via support or navigation forms
• 8% via feedback surveys

Only 29% of respondents said their organizations have a policy about using pronouns.

Use of visual signs of welcome varied widely

Visual signs signal to patients that a healthcare setting is a safe and welcoming place. What is meant by a visual sign of welcome? Language and images that include a diverse representation of gender:

• Including gender-neutral or inclusive signage
• Gender-neutral or inclusive restrooms
• Patient information depicting a variety of genders or specifically geared toward the LGBTQ+ community
• Staff badges indicating pronouns or other signs of inclusion for the LGBTQ+ community
• Posted non-discrimination statements or patient bill of rights, including sexual orientation/gender identity
• Online accessible information about being a safe space for people of all sexual orientations/gender identities

Best practices for places of healthcare include all of these signs of welcome.

Our survey found that many surveyed organizations use one or more of the signs of welcome but few/none used all of them. Nearly half of organizations posted non-discrimination statements, information online about being a safe space for all, and inclusive patient education materials. However, only one-third used pronouns on staff badges, gender-neutral or inclusive signage, hospital gowns, and restrooms. Many respondents were unsure about whether their organizations offer each sign of welcome, indicating lack of organization-wide awareness and engagement.

Use of visual signs of welcome is an internal change within an organization that could have a substantial impact. Letting people know they are in a welcoming space can facilitate more open communication and patient sharing of key health information with their providers. This is important for successful healthcare.

Patient materials lack gender inclusivity

Patient documents and educational materials should be written in a way that does not discriminate against a particular sex or gender, does not perpetuate gender stereotypes, and improves communication with patients. For example, avoiding the terms “men” and “women” when “people at risk for breast cancer” could be used.

This can also help convey that everyone can get breast cancer—although at different frequencies—an often misunderstood fact (19-20). For those assigned female at birth, the lifetime breast cancer rate in the general population is 13% but can be up to 70% among people with certain inherited mutations. Among people assigned male at birth, the lifetime risk of breast cancer is 0.1% but rises to 7% among those with certain inherited mutations. Mastectomy can reduce those risks and is sometimes recommended for people at high risk due to certain inherited mutations. For those considering gender-affirming surgeries, it is important to discuss personal or family cancer history, as gender-affirming top surgery may not be as complete as risk-reducing mastectomy recommended to reduce hereditary cancer risk (21).

When it comes to putting gender-inclusive language into practice, only 9% of respondents' organizations used it in all patient education materials, 47% sometimes or mostly did, 24% didn’t, and 19% were unsure. However, that appears to be changing. Seventy-nine percent of respondents indicated that their organizations were moving toward more gender inclusive language and 51% indicated that these issues were of high or very high priority in their organization. However, 22% indicated these issues were a low or very low priority for their organization and 29% were unsure of their organization's priority.

Among respondents, some organizations had or were in the process of implementing The National Academies of Science, Engineering, and Medicine (NASEM) recommendations on data collection of sex, gender identity, and sexual orientation. However, the vast majority were unsure whether these recommendations were being considered.

Gender and breast cancer screening

Use of gender-inclusive language is a good first step to providing inclusive care. It is also important to consider patient education for all populations to ensure patients have the information needed to adhere to recommended cancer screening, identify cancer signs, and get prompt cancer diagnoses. Finding and treating cancer early improves survival outcomes and quality of life for cancer patients.

In the case of breast cancer screening, this requires personalizing screening information for specific patients.

For example, screening all people assigned female at birth (AFAB) for breast cancer, consistent with guidelines, is important. But there are specific considerations for trans men, including:

• Surgical considerations
• Gender-affirming hormone considerations
• Inherited mutations and risk

While some trans men have top surgery, which reduces their risk of breast cancer, this surgery differs from the more extensive bilateral mastectomy recommended as a risk-reducing measure for those at high risk due to an inherited mutation. Discussions between providers and patients about these issues and representation in patient materials are key to assuring that patients have the information they need to make informed decisions about their preventive care.

A major issue for patients assigned male at birth (AMAB) is providing appropriate breast cancer screening for those who are at high risk. This was noted by several survey respondents. While the frequency of breast cancer among those AMAB is low (0.1% in the general population), it can be as high as 1-7% among those who have an inherited mutation in a gene that increases breast cancer risk. This is important for all people but particularly for trans women whose care may be overlooked in this regard.

Additionally, there is little information about the impact of gender-affirming hormonal care on breast, endometrial, ovarian, and prostate cancer risk. Highlighting information that is available is important: for example, guidelines from the American College of Radiology for breast cancer screening for transgender women/trans femme folks who are on HRT. Furthermore, it is important that providers do not make assumptions about gender that could lead to underscreening and underdiagnosis of cancer or other health issues.

Barriers to collecting gender data, implementing gender-inclusive language

When asked about barriers to collecting gender data and implementing gender-inclusive language, the most common response was a lack of certainty about whether barriers existed or not. This lack of certainty suggests a lack of cohesive, organization-wide planning regarding gender inclusivity issues.

Of those who responded to whether there were barriers to implementation of gender-inclusive language at their organization, 34% reported barriers, including:

• Lack of awareness of the importance of inclusive language
• Resistance of staff, leadership, or physicians
• Cost of updating existing materials
• Lack of time
• Religious objections
• Lack of commitment or communication about the use of inclusive language
• Political pressure
• Lack of research data on sexual orientation and gender minority groups to include in informational materials
• Difficulty achieving consensus on terminology
• Difficulty translating gender-neutral terms into Spanish

Of the barriers cited, lack of awareness of the importance of inclusive language was the most commonly reported. To counter this barrier, most indicated a need for general information about why gender inclusivity is important and why language specifically is important. Other suggested supports included:

• Materials to engage staff
• Lists of appropriate terms to use
• Examples of materials with inclusive language
• Training materials
• Information about NASEM and other guidelines for collecting information and examples of templates for data collection
• Examples of Spanish language materials

Tips for creating more inclusive environments

1. Avoid assumptions and stereotypes

Strive for respectful and accurate engagement with patients. Avoid generalizations and default assumptions as these may create barriers to effective healthcare. Treat each person as an individual with unique healthcare needs. Do not assume that a given person will want or not want particular tests, diagnostics, or information.

2. Replace outdated labels with appropriate wording: pronouns and gender identity

Keep current on terms in your field. Be aware that language is constantly shifting and evolving. Using preferred language/terms shows respect. Asking for and using the pronouns that person indicates as well as terms that reflect their gender identity is common courtesy and better builds provider-patient interactions.

3. Use inclusive language

Using language that focuses on the healthcare issue in question can improve communication with patients.

• The terms "people," "individuals," or "patients" can often be used rather than "men and women."
• For more gender-driven topics, an organ-based approach is often more accurate and less confusing. For example, "People with a uterus should be aware of the signs of endometrial cancer" is more inclusive than "women should be aware of the signs of endometrial cancer."

The former includes transgender people with a uterus and excludes people who have had a hysterectomy, focusing the message on the appropriate audience.

4. Create welcoming, inclusive physical spaces, including signage and symbols

• Have imagery in facilities that reflect patient diversity to show inclusion.
• Have gender-neutral or inclusive restrooms with clear signage, e.g., convert single-use person restrooms previously signed for men and women to all genders.
• Have patient information depicting a variety of genders or specifically geared toward the LGBTQ+ community.
• Have staff badges indicating pronouns or other signs of inclusion for the LGBTQ+ community.
• Post non-discrimination statements or a patient bill of rights, including sexual orientation/gender identity.
• Communicate online about being a safe space for people of all sexual orientations/gender identities.

5. Use communication methods that support gender inclusion

• Update patient materials to incorporate inclusive language, imagery, and approaches.
• Use patient-indicated pronouns, gender identification, and name preferences consistently across staff. Overlooking or dismissing patients' preferences can undermine and reduce communication and lead to suboptimal healthcare.
• Support inclusion by making practices mainstream and standard in both written and spoken communications.
• Make sure new staff and students/interns are updated appropriately.

6. Ensure healthcare research is inclusive

Lack of information about LGBTQIA+ groups hinders healthcare. When doing healthcare research, inclusion is essential in both the study design process and participant recruitment to address gaps in knowledge and build evidence-based recommendations.

7. Incorporate training about LGBTQIA+ patients in continuing education

Education about patient needs and inclusion is an ongoing process. Include gender diversity training with other continuing education or professional development to regularly address changing issues. Encourage colleagues to participate and departments to include inclusion training as a regular part of their education process.

8. Build individual and institutional commitments

Listen to lived experiences of the gender-diverse community. Create policies and protocols to standardize inclusive practices in your institution/organization. As materials are updated, make sure that they are reviewed for inclusion and cultural sensitivity. Ask members of the LGBTQIA+ community to participate in the creation of research study designs.

(Adapted from Marjadi B and colleagues' paper: Twelve Tips for Inclusive Practice in Healthcare Settings. Int J Environ Res Public Health. 2023 Mar 6;20(5):4657.)

You can create a foundation for gender-inclusive spaces by incorporating simple steps over time, such as learning more LGBTQ+ vocabulary, using gender-neutral language and pronouns, and participating in training and workshops.

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