Article: Breast cancer risk for transgender men with inherited mutations
|At a glance||Guidelines|
|What does this mean for me?||Questions for your doctor|
|Clinical trials||Related resources|
ARTICLE AT A GLANCE
What is this article about?
This article is about the lack of information and guidelines for trans men and non-binary people with inherited mutations in and who have mastectomies as part of their gender-affirming care.
Why is this article important?
Like many other marginalized populations, LGBTQIA+ people face and are often overlooked when it comes to health care and research about medical conditions, and trans, nonbinary, and gender expansive people often face even higher . There are an estimated 1.5 million transgender people in the United States, and little information related to the cancer risk and cancer care in this community is available. This is especially true for people who have an inherited mutation that increases their risk of breast cancer. Little to no research has led to a lack of guidelines to help trans people make medical decisions related to their cancer risk. The authors of this article discuss medical decisions related to breast cancer risk for transgender men with a or mutation.
Breast cancer risk in transgender men with a mutation
For people with a mutation who are assigned female at birth, including transmasculine people, the lifetime risk for breast cancer is very high, between 50 to 75 percent. This is significantly higher than the 12 to 13 percent lifetime risk in the general female population.
Many transgender men and nonbinary people who were assigned female at birth may undergo “top surgery”—mastectomy to remove breast tissue—as part of their gender-affirming care. Several types of top surgeries are available based on breast size and personal preference. The amount of residual breast tissue varies based on different gender-affirming mastectomy techniques. For example, a subcutaneous mastectomy, which preserves more breast tissue than would be removed during a risk-reducing mastectomy, provides the most natural-looking masculine chest.
The article emphasizes that for transgender men with a , or other mutation that significantly increases breast cancer risk, standard top surgery will likely leave residual breast tissue. Having residual tissue and its associated cancer risk, however, may be unacceptable. Regardless of type of surgery, all mastectomy specimens should be submitted for pathologic evaluation.
The authors also noted the lack of information on how and when to screen at-risk transmasculine patients if they choose surgery that leaves breast tissue. Some studies have concluded that screening isn’t necessary, but these studies were based on a limited number of transgender men, most of whom did not have an inherited risk for cancer.
Hormone therapy used as part of gender-affirming treatment may also affect breast cancer risk in people with inherited mutations, although the exact effects on risk are unclear.
Breast imaging before and after surgery
There is a lack of data regarding the best way to manage breast cancer risk for at-risk trans men before or after they have top surgery.
Breast tumors that are discovered before a mastectomy can be removed more precisely. A pre-surgical for those with a family history or genetic predisposition is standard of care. Genetic testing before top surgery to determine whether a complete prophylactic mastectomy should be considered, but there are currently no guidelines on this aspect of care.
For post-surgical screening, the efficacy of the screening depends on whether there is enough breast tissue for a or if other screening methods (e.g., or ) would be better suited to the patient.
Transgender men and nonbinary people assigned female at birth who have an increased risk of breast cancer due to an inherited mutation should discuss screening and risk reduction with their health care providers as early in their transition as possible. Those who do not know their genetic risk profile but who have a family history of breast cancer should consider genetic testing before they undergo any surgery or gender-affirming hormonal therapy. Depending on the results, pre-surgical screening may be a good idea.
The frequency and type of post-transition screening will depend on your age, the amount of breast tissue you have after surgery, and the hormone treatments you choose going forward. It is important to discuss your risk and screening recommendations with your healthcare providers based on the amount of residual breast tissue.
Jaber C, Ralph O, Hamidian Jahromi A. Mutations and the Implications in Transgender Individuals Undergoing Top Surgery: An Operative Dilemma. Plast Reconstr Surg Glob Open. 2022; 10(1). ePublished 2022 Jan 10.
Salibian A, Axelrod D, Smith J, et al. Oncologic Considerations for Safe Gender-Affirming Mastectomy: Preoperative Imaging, Pathologic Evaluation, Counseling, and Long-Term Screening. Plast Reconstr Surg. 2021; 147(2):213e-221e.
Fledderus AC, Gout HA, Ogilvie AC, et al. Breast malignancy in female-to-male transsexuals: systematic review, case report, and recommendations for screening. Breast. 2020; 53:92–100.
de Blok CJM, Wiepjes C M, Nota N M, et al. Breast cancer risk in transgender people receiving hormone treatment: a nationwide cohort study in the Netherlands. BMJ 2019; 365: l1652.
Please note: Some references may not include affirming language.
Disclosure: FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board before publication to assure scientific integrity.
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This article is relevant for:
Transgender men with an inherited mutation
This article is also relevant for:
People with a genetic mutation linked to cancer risk
Be part of XRAY:
Yale NewHaven Health provides management and risk reduction options for transgender men with a or mutation, including the following:
- Ages 25-29: Yearly breast (preferred) or and clinical breast exams every 6-12 months.
- Ages 30-75: Yearly breast and spaced every 6 months. Clinical breast exam every 6-12 months.
- with medications such as tamoxifen or raloxifene.
- prophylactic surgery to remove healthy breast tissue.
The American College of Radiology has guidelines for breast cancer screening of transgender men with varying degrees of risk. For transgender men they recommend the following:
- Those at average risk may consider digital breast or digital screening after age 40.
- Those with an intermediate risk should have annual DBT or after age 30 or an if there is a previous breast cancer history.
- For those with a family history, screening should begin 10 years before the family member in question was diagnosed but not before age 30.
- Those with a genetic risk should be screened by DBT, digital or with contrast.
FORCE recommends that you speak with a genetics expert who can review your personal and family history of cancer and help you determine the best risk management and cancer screening plan for you.
- Not every provider who offers gender-affirming care has experience with the medical concerns of people with a high risk of , including those who have a or mutation. Likewise, not every surgeon who performs prophylactic mastectomies to address cancer risk is skilled in supporting trans and nonbinary people. Ask if your doctor is able to support you with both of these experiences.
- If you are uncomfortable with , ask if or options are available. If you have already completed a gender-affirming top surgery, ask what screening options may be appropriate for your needs.
- Ask if your doctors are familiar with the literature and guidelines that exist for transgender and nonbinary people and cancer care.
The following studies are enrolling people from the LGBTQ+ community.
- PRIDE Study: The PRIDE Study is the first long-term national health study of LGBTQ+ people. The goal is to improve the long-term health and wellness of LGBTQ+ people.
Exploring Gender Diverse Experiences of Risk: A Johns Hopkins genetic counseling student is conducting an interview study exploring gender-diverse folks’ experiences of care, with the aim of better educating providers about LGBTQ+ needs and concerns. Interviews are held on the Zoom platform with individuals who qualify. If you are interested in participating, contact Sarah Roth at email@example.com.
Visit our Featured Research Page and Research Search and Enroll Tool to find additional studies enrolling people with, or at high risk for cancer. Note: Most of these trials are geared towards cisgender people.
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+ community. Check our National Meetings page for the next scheduled meeting.
- The National LGBT Cancer Network offers cancer support group meetings.
The following resources can help people from the LGBTQ+ community find compassionate care.
- National LGBTQ Cancer Network Database of LGBTQ+-Welcoming Cancer Screening Providers
- National LGBTQ Cancer Network Database of LGBTQ+-Welcoming Cancer Treatment Providers