To the Editor:
Approximately 0.5-2.7% of the population identify as transgender and/or gender diverse (TGD); however, little is known about TGD pediatric and young adult patients with cancer.1–5 To characterize outcomes for this patient population, we conducted a retrospective cohort study of 14 patients who self-identified as TGD and were evaluated before 21 years of age for a cancer diagnosis at Dana-Farber Cancer Institute/Boston Children’s Hospital (BCH) between 1978-2020. Patients were identified using International Classification of Diseases, 10th Revision codes and clinic notes from the Gender Multispecialty Service (GeMS) at BCH6 or containing terms used to document TGD identity as previously described.2 Clinic notes available in the medical record from 1990-2021 were reviewed, and all patients had completed cancer treatment.
Table 1 summarizes cohort characteristics, including aspects of gender-affirming care (GAC). After disclosure of TGD identity to providers, seven (50%) and four (28%) patients’ notes had misgendering and incorrect name usage, respectively; these instances occurred in notes from 2018-2021 for six patients (75%). Five (36%) patients received gender-affirming surgery (GAS) with no noted complications. Of the eleven (79%) patients who received gender-affirming hormone therapy (GAH), two developed meningiomas a median of 31.2 years (range: 28.5-33.9) after cranial irradiation and median of 6.6 years (range: 3.2-10.0) after starting GAH. One patient received GAH four months before diagnosis of a serous borderline ovarian tumor, and post-surgery restarted GAH after multidisciplinary discussion with the patient and family.5 No other patients had significant side effects. Twelve (86%) patients’ oncology notes reported discussion with other specialty providers regarding the intersection of GAC and cancer treatment or survivorship care, including GAH dose adjustments for treatment-associated hypogonadism and discussion of increased risk of stroke with estradiol for a patient who had previously suffered a stroke after chemotherapy and radiation for a brain tumor.
Table 1.
Patient demographics, clinical characteristics, and characteristics of gender-affirming care of transgender and gender-diverse pediatric and young adult patients with cancer
| Characteristic | No. (%); Median (range) |
|---|---|
|
| |
| Sex designated at birth (n=14) | |
| Female | 9 (64%) |
| Male | 5 (36%) |
|
| |
| Gender Identity (n=14) | |
| Girl/Woman/Transfeminine | 3 (21%) |
| Boy/Man/Transmasculine | 8 (57%) |
| Gender Fluid | 1 (7%) |
| Nonbinary | 2 (14%) |
|
| |
| Race/Ethnicity (n=14) | |
| Non-Hispanic White | 13 (93%) |
| Other | 1 (7%) |
|
| |
| Median age at cancer diagnosis (n=14) | 10.5 years (range: 2.5-19.8) |
|
| |
| Cancer histology (n=14) | |
| Hematologic malignancy | 6 (43%) |
| Solid tumor | 8 (57%) |
|
| |
| Cancer treatment (n=14) | |
| Systemic therapy | 11 (79%) |
| Surgery | 10 (71%) |
| Radiation | 9 (64%) |
|
| |
| Median follow-up after cancer diagnosis (n=14) | 12.2 years (range: 1.6-41.3). |
|
| |
| Age at which patients disclosed to providers regarding their gender identity (n=14) | 15.5 years (range: 11.5-36.0) |
|
| |
| Cancer diagnosis before self-identifying as TGD to providers (n=14) | |
| No | 10 (71%) |
| Yes | 4 (28%) |
|
| |
| Median time to self-identifying as TGD to providers after cancer diagnosis (n=10) | 9.5 years (range: 4.2-33.0) |
|
| |
| Gender-affirming hormone therapy* (n=14) | |
| None | 3 (21%) |
| Before cancer diagnosis | 1 (7%) |
| After cancer diagnosis | 10 (71%) |
|
| |
| Age at gender-affirming hormone therapy (n=11) | 25.0 years (range: 14.5-31.2) |
|
| |
| Median follow-up after gender-affirming hormone therapy (n=11) | 2.7 years (range: 0.3-10.0) |
|
| |
| Gender-affirming surgery† after cancer treatment (n=14) | |
| None | 9 (64%) |
| Before cancer diagnosis | 0 (0%) |
| After cancer diagnosis | 5 (36%) |
|
| |
| Age at gender-affirming surgery (n=5) | 26.1 years (range: 17.3-29.9) |
|
| |
| Median follow-up time after gender-affirming surgery (n=5) | 5.2 years (range: 2.4-15.1) |
|
| |
| Documented discussion regarding fertility preservation before starting GAH (n=11) | |
| No | 6 (55%) |
| Yes | 5 (45%) |
|
| |
| Pursued fertility preservation before starting GAH (n=5) | |
| No | 5 (100%) |
| Yes | 0 (0%) |
|
| |
| Status at last follow-up (n=14) | |
| Alive without evidence of disease | 13 (93%) |
| Dead of toxicity | 1 (7%) |
|
| |
| Notes regarding coordination of gender-affirming care between oncology and other specialty providers (n=14) | |
| No | 2 (14%) |
| Yes | 12 (86%) |
|
| |
| Notes with incorrect pronoun usage by oncology providers (n=14) | |
| No | 7 (50%) |
| Yes | 7 (50%) |
|
| |
| Notes with incorrect name usage by oncology providers (n=14) | |
| No | 10 (71%) |
| Yes | 4 (28%) |
Includes gonadotropin-releasing hormone agonists
Includes bilateral mastectomies, bilateral salpingo-oophrectomies, unilateral salpingo-oophrectomy, and bilateral orchiectomies
Abbreviations: TGD, transgender and gender-diverse
Our cohort had excellent clinical outcomes after multimodal cancer treatment, but we found that TGD patients may benefit from specific considerations regarding GAC.2,5 Inconsistent usage of pronouns/names was prevalent in oncology and survivorship notes, suggesting providers may benefit from further education.7–10 Most TGD patients shared their gender identity with providers after their cancer diagnosis, and many during survivorship care. Most patients received multidisciplinary care, emphasizing the importance of care coordination for this population. Although follow-up after GAC was relatively short, our cohort had limited complications or toxicity. It is unclear whether the cancers that occurred after GAH were associated with hormones; however, secondary meningiomas can occur after cranial irradiation.11 While no patients in our cohort underwent fertility preservation prior to GAC, conversations regarding fertility preservation and reproductive health remain important.12–14
Our study is limited by small cohort size, retrospective design, and reliance on medical record review. In addition, some patients received aspects of cancer treatment or GAC at other institutions. Treatment in this cohort occurred over many decades, during which medical care, including fertility preservation options, cancer therapy, and GAC, have evolved and expanded. Future prospective studies with larger cohorts are needed to further explore intersections among cancer care, survivorship care, and GAC coordination, including fertility preservation.
Funding:
KXL is funded by the National Institutes of Health Loan Repayment Program. KM is funded by a grant from the Doris Duke Charitable Foundation. BC is supported by grant MRSG CPHPS 130006 from the American Cancer Society.
Abbreviations:
- GAC
gender-affirming care
- GAH
gender-affirming hormone therapy
- TGD
transgender and gender-diverse
Footnotes
Conflicts of Interest: None.
Prior presentations: Presented in part at the International Society of Paediatric Oncology Virtual Congress, October 21-24, 2021
Data Availability:
The data underlying this article cannot be shared publicly due to ethical/privacy reasons. The data will be shared on reasonable request to the corresponding author.
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Data Availability Statement
The data underlying this article cannot be shared publicly due to ethical/privacy reasons. The data will be shared on reasonable request to the corresponding author.