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Transgender Women with Prostate Cancer Are Under-Represented in National Cancer Registries - Beyond the Abstract

Transgender women are a growing population in the United States, but they are extensively underrepresented in national cancer databases, such as the Surveillance, Epidemiology, End Results (SEER)-Medicare program. The incidence of prostate cancer in transgender women is reported to be much lower than in cisgender men. Still, the lack of data on this population makes it challenging to understand the epidemiology of prostate cancer in this group.

We applied to SEER-Medicare to assess this discrepancy; however, the sample size for transgender women with prostate cancer was so small that our application for data was not accepted. The SEER-Medicare data use agreement restricts the reporting of sample sizes of fewer than 11 out of concern for patient privacy. We believe improved transgender representation is urgently needed to bridge the evidence gap for this growing population.

Currently, the guidelines for prostate cancer screening in transgender patients are based on expert opinion.1 All transgender women are at risk of developing prostate cancer, even those who receive gender-affirming surgery because the prostate is not removed. Indeed, metastatic prostate cancer has been diagnosed in transgender women.2 However, without inclusive demographic categories and clear delineation of epidemiology, prostate cancer risks remain unknown, and optimal screening practices remain undefined.3,4

One reason for the lack of data on this population is that some hospitals included in SEER and the National Cancer Database might not designate transgender identity in a standardized fashion, precluding downstream categorization. In our article, we provide an example of gender identity and sexual orientation questionnaire that providers can use to help capture this information in the medical record. Improving transgender representation in national cancer registries will help inform prostate cancer epidemiology and professional guidelines.

Written by:

  • Elie Kaplan-Marans, MD, Maimonides Medical Center, Brooklyn, NY
  • Tenny R. Zhang, MD, New York Presbyterian Hospital, New York, NY 
  • Lee C. Zhao, MD, NYU Langone, New York, NY
  • Jim C. Hu, MD, MPH, Weill Cornell, New York, NY
References:

  1. Nik-Ahd F, Jarjour A, Figueiredo J, et al. Prostate-Specific Antigen Screening in Transgender Patients. Eur Urol. 2023;83(1):48-54.
  2. Bertoncelli Tanaka M, Sahota K, Burn J, et al. Prostate cancer in transgender women: what does a urologist need to know? BJU Int. 2022;129(1):113-122.
  3. World Professional Association for Transgender Health. Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People [7th Version]. Published 2012. Accessed August 17, 2022.
  4. Dickstein DR, Marshall DC. Top, bottom, or vers? Creating a more equitable health system for sexual and gender minority patients with prostate cancer. Nat Rev Urol. 2022;19(6):321-322. 
  5. Kaplan-Marans E, Zhang TR, Zhao LC, Hu JC. Transgender women with prostate cancer are under-represented in national cancer registries [published online ahead of print, 2022 Dec 6]. Nat Rev Urol. 2022;10.1038/s41585-022-00688-w. doi:10.1038/s41585-022-00688-w
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