Personal Story: Male transgender breast cancer patient shares his experience in NYT piece

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Contents

A personal story Questions for your doctor
Breast cancer risk in transgender men Limitations               
Clinical trials Resources

In “Living as a Man, Fighting Breast Cancer: How Trans People Face Care Gaps” (published October 16, 2016 in the New York Times), Denise Grady tells the story of Eli Oberman, a transgender man who was diagnosed with breast cancer at age 27.

Oberman’s story

Oberman began to take male hormones at age 19 to change his gender from female to male, but he had not yet had surgery. He initially wanted “top surgery,” which is breast removal that leaves some breast tissue to give the chest a “male-looking contour,” but he did not have this surgery due to its cost.

In 2010, he discovered a lump in his breast, and after 6-8 months, a scan and biopsy showed an aggressive cancer.  His doctor recommended double mastectomy and chemotherapy.

Struggles faced by transgender male breast cancer patients

“The cancer was a stark reminder that [Oberman] was still vulnerable to illnesses from his original anatomy—and that the medical world has blind spots in its understanding of how to take care of trans men and women,” Grady writes.

Oberman discusses some of the negative experiences he and his transgender friends have had, including an incident when Oberman had to take off his shirt during a medical appointment for his breast cancer. As this was before his mastectomy, the male technician attending to Oberman saw his breasts and said, “Why would you do this to yourself? It’s disgusting.” Oberman had previously gone to a clinic that specialized in LGBT patients; he was afraid to plunge into the world of mainstream medicine (although he comments that doctors typically treated him with respect).

But experts say that transgender patient treatment is improving. The article notes that hospitals and professional schools have begun to train their employees and students to better care for transgender patients, but notes that there are still struggles. However, this training does not fix the fact that men with breast cancer may be “the lone male patient in waiting rooms full of women…” Experts also observe that transgender individuals are more likely to avoid screenings and medical care for parts of their bodies from their assigned sex.

This fear of acceptance was why Oberman never joined a breast cancer support group. And his hesitancy to continue his care with mainstream medicine continued after his breast cancer. He was afraid of being treated badly in a gynecologist’s office, recalling his friends’ experiences with receptionists who assumed they shouldn’t be there because of their deep voices. He waited five years after his breast cancer surgery before deciding to have his first Pap smear (for cervical cancer screening) at age 32; guidelines from the Centers for Disease Control and Prevention (CDC) recommend women begin having Pap smears at 21.

Oberman and his friends are not alone. Dr. Asa Radix, his physician and the senior director of research and education at the Callen-Lorde Community Health Center in New York, which provides health care for LGBT patients, said that trans men usually avoid gynecologists. “Imagine, if you’re a masculine-looking trans man, and you’re going to the gynecologist…You go to the front desk, and you have to out yourself. Everyone can hear what’s going on. You just want to run out the door,” he said in the article. Additionally, some patients “may not want to think they have the anatomy they have,” he said.

Oberman also describes the effects of stopping his testosterone treatments (recommended by health care providers due to the possibility of the hormone interfering with healing after his mastectomy), as extremely hard for him emotionally: “I went insane. I wasn’t rational. I was lying on the floor, crying.”

This points to a larger problem: not a lot of data is available for guiding transgender patients regarding their hormones. While no evidence shows that the hormones transgender patients take increase the risk of cancer, there simply hasn’t been much study of it.

Issues facing transgender people facing breast cancer risk

Male transgender breast cancer patients have a unique and difficult struggle. Men in the general population typically don’t think about breast cancer risk, though they do have a small risk (~1/1000 men not affected by hereditary cancer get breast cancer, while 2-8% of men with BRCA mutations get breast cancer). However, for male transgender people who still have their breasts, this risk is likely closer to the risk (about 12% lifetime) of the average woman in the U.S. For male transgender people with mutations in BRCA or other genes that increase cancer risk, the lifetime risk is even higher.

Oberman mentioned that his mother and her mother both had breast cancer; while both diagnoses occurred after menopause, this information paired with his young age at his own diagnosis should have prompted genetic testing. Male transgender patients who have a family history of breast cancer or a mutation in a cancer risk-increasing gene, such as BRCA, are at even higher risk. Currently research on the effects of feminizing or masculinizing hormone treatment on cancer risk is limited, particularly for people affected by hereditary cancer. This can make decision-making even more challenging for transgender people with mutations in BRCA or other genes that increase cancer risk. FORCE has received questions that highlight this and other gaps in research and services, such as:

  • What is the effect of feminizing hormones on breast cancer risk?
  • Are people with BRCA mutations who take feminizing or masculinizing hormones at greater risk for cancer?
  • Is enough breast tissue removed during masculinizing chest surgery to reduce breast cancer risk in BRCA mutation carriers?
  • Do plastic surgeons have experience in performing male chest reconstruction after risk-reducing bilateral mastectomy? When is it indicated?

Posted 12/21/16

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References

Breast cancer in men key statistics, American Cancer Society.

Grady, D. “Living as a Man, Fighting Breast Cancer: How Trans People Face Care Gaps,New York Times, October 16, 2016.  

Deutsch MB, Editor, Guidelines for the Primary and Gender-Affirming Care of Transgender and Gender Nonbinary People, 2nd Edition. June 17, 2016

This article is relevant for:

Transgender men with, or at high risk for breast cancer

This article is also relevant for:

Men with breast cancer

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Expert Guidelines

Current recommendation for cancer screening in transgender people

In June 2016, the University of California Center for Excellence in Transgender Health published the second edition of Guidelines for the Primary and Gender-Affirming Care of Transgender and Gender Nonbinary People, which include the following guidelines for cancer screening and treatment:

  • For transgender women, breast cancer screening beginning 5-10 years after use of feminizing hormones.
  • For transgender men who have not had mastectomy or who had breast reduction rather than mastectomy, routine breast cancer screening based on personal and/or family history.
  • Genetic counseling and/or testing if there is a known mutation in BRCA or other gene that increases breast cancer risk, or if the patient has a personal or family history of cancer that meets national guidelines for genetic counseling and testing.
  • Screening for other cancers (e.g. cervical, endometrial, prostate, etc.) should be based on an individual’s personal and/or family history of cancer.

Both the New York Times article and the guidelines emphasize the need for health care providers to assure that the medical system is treating transgender patients with appropriate care.

Expert Guidelines

The University of California Center for Excellence in Transgender Health published the second edition of Guidelines for the Primary and Gender-Affirming Care of Transgender and Gender Nonbinary People, which include the following recommendations for cancer screening and treatment.

  • For transgender women, breast cancer screening beginning 5-10 years after the use of feminizing hormones.
  • For transgender men who have not had mastectomy or who had breast reduction rather than mastectomy, routine breast cancer screening based on personal and/or family history.
  • Genetic counseling and/or testing if there is a known mutation in a BRCA or other gene that increases cancer risk or if the patient has a personal or family history of cancer that meets national guidelines for genetic counseling and testing.
  • Screening for other cancers (e.g., cervical, endometrial, prostate, etc.) should be based on an individual’s personal and/or family history of cancer.

Updated: 11/20/2021

Questions to Ask Your Doctor

  • Do you have experience working with transgender patients?
  • What support networks are available to individuals who have my orientation or concerns?

Open Clinical Trials

The following are studies enrolling people from the LGBTQ+ community. 

  • PRIDE Study: The PRIDE Study is the first long-term national health study of LGBTQ+ people. The goal of this study is to improve the long-term health and wellness of LGBTQ+ people. 

Visit our Featured Research Page and Research Search and Enroll Tool to find additional studies enrolling people with, or at high risk for cancer. 

Updated: 11/20/2021

Peer Support

The following organizations offer peer support services for people from the LGBTQ+ community.

  • FORCE holds virtual support meetings organized by and for members of the LGBTQ+ hereditary cancer community. Check our National Meetings page for the next scheduled meeting. 
  • The National LGBTQ Cancer Network offers cancer support group meetings.

Updated: 11/20/2021

Find Experts

The following resources can help people from the LGBTQ+ community find compassionate care.

Updated: 11/20/2021

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