No matter how you express your gender identity, a cancer diagnosis can be difficult to handle. Misunderstanding of gender diversity, compounded by systemic health disparities, can make accessing quality care even more difficult. It is important for transgender and gender-nonconforming people to find support and assistance where possible.

What Is Gender Diversity?

Gender diversity refers to the range of gender expression beyond the binary of sex assigned at birth. Gender can be expressed in many ways, including one’s name, pronouns and clothing choices. Some people choose to medically transition with surgery or hormone therapy while others do not.

There is a difference between sexual orientation and gender identity. A person can transition or make changes to their gender presentation and have no change in sexual preference, for example. However they identify, every person with cancer deserves to live and thrive as the most authentic representation of themselves.

The language of gender representation is constantly evolving. This fact sheet seeks to use the appropriate terminology. For more on these topics, please read our companion fact sheet “Coping With Cancer as an LGBTQ+ Person.”

Structural Barriers to Care

Social stigma and a lack of trans-affirming medical training mean that non-binary, two-spirit, intersex or transgender individuals may have trouble accessing appropriate medical care. A lack of federal, state and workplace protections can also present significant barriers.

Even with good insurance and access to care, many individuals face barriers within health care systems. Health care documentation may provide limited binary gender choices: male or female. A trans individual might have trouble changing the gender listed in their client or medical record.

This might lead to negative interactions and the misuse of chosen name or pronouns by doctors and nurses.

In some cases, patients may have difficulty locating referrals for affirming specialists that suit their anatomy. A transgender woman with prostate cancer, for example, is entitled to the care of a provider who can meet her needs without fear of discrimination. Screenings and important follow-up care may be missed due to lack of a sense of emotional safety in navigating the healthcare environment. For instance, a trans man with a gynecologic cancer may feel unwelcome in a treatment space designated for “women’s cancers.” These difficulties can require great effort or even legal action to resolve.

Interpersonal Challenges

Difficulties may also stem from care providers themselves. Poor or prejudiced interactions can lead to distrust or harmful outcomes. While some of these impacts may be unintended, they can still greatly affect a person’s emotional well-being.

Discrimination may also be experienced from hospital administration and health care teams. Examples include misgendering in everyday communication or failure to use correct names or pronouns. These mistakes can lead to a lack of trust. Health care providers may also make assumptions during and after treatment. They might assume a patient will want breast reconstruction after a mastectomy, for example, or they might assume desires about fertility, hair loss or other topics.

The Power of Self-Advocacy

It is not always easy to disclose a non-normative gender identity. Finding a supportive health care team can have many benefits for your physical and emotional well-being. This allows you to concentrate fully on coping with your cancer experience.

However, revealing personal information may cause you to relive difficult or even traumatic coming out experiences. Above all, this is a highly personal choice. Your safety and comfort should always be first priority.

If you face discrimination, do not be afraid to seek a second opinion or find a better fit. The Affordable Care Act forbids health care providers who receive federal funding to discriminate on the basis of gender identity. This includes those accepting Medicare and Medicaid.

Finding Support

The tolls of treatment can be exhausting. Supportive medical institutions should indicate non-discriminatory policies. These might be posted on their website or within the care setting. They may include gender-neutral bathrooms and other trans-affirming accommodations. Patient advocates might be available to help address these and other issues.

A lack of personal support can make things even harder. Many trans and gender noncomforming individuals unfortunately have reduced or no contact with their biological families. A lack of legal protections for partners may also raise barriers to care.

Alternative forms of support can come from chosen family and friendship groups. Counseling and support groups also provide ways to process the cancer experience, through spaces tailored specifically for gender diverse patients. There are organizations that can assist. The LGBT Cancer Network provides online listings of inclusive medical providers across the country. Lambda Legal and Transgender Law Center can help you with legal challenges. Such challenges can range from name changes to gender markers.

CancerCare celebrates all facets of gender diversity. Our oncology social workers provide counseling in New York and New Jersey and telephone case management throughout the country. Support groups are available for those with a cancer diagnosis and their loved ones. All services are free of charge.

Edited by Rachel Barnhart, LMSW