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

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What is this study about?

This study looks at whether knowing you have an inherited mutation in BRCA1 or BRCA2 impacts sexual satisfaction in women (people assigned female at birth).

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 hereditary cancer 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 BRCA genes. A few participants had an inherited mutation in a different gene that increases cancer risk (two in RAD51C, one each in ATM, CHEK2, PALB2, POT1 and TP53).

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. Disparities in healthcare exist, but 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 (RRSO) 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

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.

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posted 2.13.25