Dear LGBTQ+ family, let’s talk about breast cancer

Our current health care system is not designed for us. Even today in California, as a breast cancer survivor still receiving treatment and a member of the LGBTQ+ community, I have personally experienced mistreatment and incorrect assumptions made by health care professionals. My wife has gone with me to appointments where we continually heard, “I’m so glad you brought your sister.” As the Executive Director of the Albie Aware Breast Cancer Foundation in Sacramento, I know the vast majority of health care professionals I work with do not want to cause us harm. Yet, the national agencies that issue breast cancer screening guidelines are directed toward “women,” excluding cisgender men and nonbinary and transgender people.

You and your health matter. As Breast Cancer Awareness Month wraps up next week, here’s what I want you to know about breast cancer year-round:

1. Data: National cancer registries have not collected information about sexual orientation or gender identity. As such, there is insufficient research on the LGBTQ+ community’s risks and experiences across the cancer continuum.¹ There are no longitudinal studies evaluating the efficacy of breast cancer screening in the transgender population.² But we can’t wait for this data—we know LGBTQ+ individuals have higher risk factors for breast cancer. While more research is needed to better understand cancer in LGBTQ+ individuals, simple changes in providers’ training and practice, like more inclusive intake forms and LGBTQ+ cultural competence, could help to start improving care today.
2. Risk factors: Among some health care providers, there is a lack of culturally competent care, and the LGBTQ+ community is less likely to have health insurance. Both factors lead to individuals missing their cancer screenings.³ Additionally, increased rates of alcohol consumption and exercising fewer times each week contribute to lesbian and bisexual women being at a higher risk of breast cancer than heterosexual women.⁴ In the transgender community, there is a lack of standardized screening protocols for breast cancer and a harmful perception that breast exams are not required.⁵
3. Screenings: An annual mammogram is recommended beginning at age 40. If you notice a change in your breasts, then contact a medical provider immediately. The Prevent Cancer Foundation has great information on cancer screenings needed at every age. 
4. Family history: You may have a higher risk of breast cancer and need to begin breast cancer screenings at an earlier age if you have a family history of cancer. Some of my friends in the LGBTQ+ community no longer have a relationship with their birth parents. Fortunately, genetic testing may be an alternative option to get more information about your cancer risk without having to contact your biological family. (If you are considering genetic testing, meet with a genetic counselor. You may want to check with your insurance company first to see if this is covered by your insurance.) You can download a family history chart and learn more about genetic testing here.

There are nonprofit organizations that are trying to improve health care for the LGBTQ+ community. In August 2022, the Prevent Cancer Foundation announced its support of 10 projects to increase cancer prevention and early detection in LGBTQ+ communities across the U.S.

Albie Aware was awarded a one-year, $25,000 grant from the Prevent Cancer Foundation to address cancer care inequities by providing free mobile mammograms and services to the historically underserved LGBTQ+ community in the greater Sacramento area.

I hope to see more individuals, philanthropists and organizations contribute to cancer prevention and services for the LGBTQ+ community, both personally and professionally. In addition, it’s imperative for health care agencies and hospitals to invest in inclusive guidelines, services and care for the LGBTQ+ community. We have long faced unique barriers when accessing the health care system. Until all populations can access preventive services and essential care, our work is not done.

Endnotes

1. Margolies L, Brown CG. Current state of knowledge about cancer in lesbians, gay, bisexual, and transgender (LGBT) people. Semin Oncol Nurs 2018;34:3‐11.
2. Expert Panel on Breast Imaging, Brown A, Lourenco AP, Niell BL, Cronin B, Dibble EH, DiNome ML, Goel MS, Hansen J, Heller SL, Jochelson MS, Karrington B, Klein KA, Mehta TS, Newell MS, Schechter L, Stuckey AR, Swain ME, Tseng J, Tuscano DS, Moy L. ACR Appropriateness Criteria® Transgender Breast Cancer Screening. J Am Coll Radiol. 2021 Nov;18(11S):S502-S515. doi: 10.1016/j.jacr.2021.09.005. PMID: 34794604.
3. American Cancer Society. “More information about cancer in LGBTQ people may help improve prevention, diagnosis, and treatment” https://amp.cancer.org/research/acs-research-highlights/cancer-health-disparities-research/cancer-health-disparities-acs-research-highlights.html
4. Quinn GP, Sanchez JA, Sutton SK, Vadaparampil ST, Nguyen GT, Green BL, et al. Cancer and Lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA Cancer J Clin 2015;65:384‐400.
5. Iwamoto, S.J., Grimstad, F., Irwig, M.S. et al. Routine Screening for Transgender and Gender Diverse Adults Taking Gender-Affirming Hormone Therapy: a Narrative Review. J GEN INTERN MED 36, 1380–1389 (2021). https://doi.org/10.1007/s11606-021-06634-7