Sexual well-being for people with BRCA1 or BRCA2 mutations

RELEVANCE

Most relevant for: People with an inherited mutation that increases cancer risk who are interested in sexual health.

It may also be relevant for:

people with a genetic mutation linked to cancer risk
people with a family history of cancer

Relevance: Medium-High

Strength of Science: Medium

Relevance rating details

What is this study about?

This study looks at whether knowing you have an in or impacts sexual satisfaction in women.

Why is this study important?

Women who inherit a mutation that increases cancer risk often reduce that risk by having surgery to remove their ovaries and/or breasts. While these surgeries can help reduce cancer risk, they are often associated with changes in sexual well-being. Unfortunately, the sexual well-being of women facing is often overlooked in the clinic.

Study findings

In this study, researchers compared answers about sexual health from 101 women with an inherited mutation that increases cancer risk to 101 women without an inherited mutation that increases cancer risk. Most women had a mutation in BRCA1 (42) or BRCA2 (44). Eight participants had a mutation in both genes. A few participants had an inherited mutation in a different gene that increases cancer risk (two in , one each in , , , POT1 and ).

To measure sexual function, researchers used the Sexual Function Questionnaire 28 (SFQ28). The questionnaire is divided into eight sections that measure sexual satisfaction: desire, arousal (sensation), arousal (lubrication), arousal (cognition or the process of thinking), orgasm, pain, enjoyment and whether they considered their partner to be stable.

Compared to women without an inherited mutation, women with an inherited mutation had significantly lower scores in the following sections of the questionnaire:

Desire
Arousal (lubrication)
Arousal (cognition)
Orgasm
Pain
Enjoyment

When researchers compared mutational status, menopausal status, education level and whether a person had a cancer diagnosis, they found lower scores that significantly differed between the groups were not due to mutation status or education level. Only menopausal status and cancer diagnosis were associated with lower scores in sexual health. Menopausal status was associated with lower scores on multiple aspects of sexual function including desire, arousal, lubrication and orgasm. Having a cancer diagnosis was also linked to lower scores in arousal, orgasm, and enjoyment.

Finally, researchers were able to show that active care addressing psycho-oncological support—the psychological, emotional and social aspects of cancer—appeared to help maintain sexual enjoyment among women with an inherited mutation.

What does this mean for me?

This study suggests that having an inherited mutation such as BRCA1 or BRCA2 does not directly affect sexual health. However, menopause emerged as a significant risk factor for sexual dysfunction. Even so, psycho-oncological support can help protect certain aspects of sexual health.

The study did not address women with an inherited mutation who lack access to psycho-oncological or psychological support. Some healthcare professional groups aim to provide resources when possible. See the links below for information about these groups.

Finally, since most care currently focuses on surveillance, preventive medications and risk-reducing surgeries, the authors suggest that counseling for women with an inherited mutation that increases cancer risk should include attention to sexuality and menopausal management.

The National Comprehensive Cancer Network (NCCN) provides guidelines for maintaining the sexual health and well-being of women with BRCA1 or BRCA2 mutations who undergo risk-reducing removal of their ovaries and tubes () before natural menopause. The guidelines recommend that doctors address bone health, cardiovascular health, psychosocial health, neurologic health, sexual health and the generalized quality-of-life aspects of undergoing RRSO. Referral to a menopause expert and considering hormone replacement therapy is also suggested for women who have not had breast cancer and undergo risk-reducing surgery.

Reference

Ferrari F, Amonti J, Giannini A, et al. Sexual Function in Women Diagnosed with Hereditary Breast and Ovarian Cancer Syndrome. Cancers (Basel). 2024;16(14):2601.

Additional Links:

Women's Health Concern: Emotional Wellness Info Sheet

U.S. Department of Health & Human Services: Office on Women’s Health: Menopause and Sexuality

The Menopause Society: Menopause Topics: Sexual Health

This project was supported by the Cooperative Agreement Number, NU58DP007909, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of FORCE and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

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 prior to publication to assure scientific integrity.

Share your thoughts on this XRAY review by taking our brief survey.

posted 2.13.25

Questions To Ask Your Doctor

How might menopause affect my sexual health given my inherited mutation?
What are available options for managing my sexual health and function after surgical menopause?
What resources are available for people with an inherited mutation who lack access to psychological support?
How can I proactively manage early menopause risks associated with an inherited mutation?

Finding Experts

The following resources can help you locate an expert near you or via telehealth.

Finding sexual health experts

The Sexual Medicine Society of North America (SMSNA) has a search tool to find experts in your area who provide sexual healthcare services.
The American Association of Sexuality Educators, Counselors and Therapists (AASECT) maintains a tool to help people find a sexual health expert near them.

Other ways to find experts

Register for the FORCE Message Boards and post on the Find a Specialist board to connect with other people who share your situation.
The National Cancer Institute (NCI)-designated comprehensive cancer centers have specialists to manage the symptoms and side effects of cancer prevention or treatment.

Updated: 04/09/2023

Study: Impact on sexual well-being among people with an inherited BRCA mutation