Improving sexual health in breast cancer survivors

In this interview, Maya Franks (Intermountain Health, UT, USA) discusses the complex and often overlooked sexual health concerns experienced by breast cancer survivors.

Maya provides a breakdown of common physical and emotional symptoms, key barriers to communicating their concerns and practical strategies for HCPs to improve sexual health screening and support in their clinic.

What specific sexual health concerns are most commonly reported by breast cancer survivors?

Patients with breast cancer – both in active treatment and surveillance – experience a wide range of sexual health concerns. These include a lack of desire or interest, inability to achieve orgasm, pain during intercourse, and negative body image [1]. These concerns stem from both physical and emotional symptoms that accompany a breast cancer diagnosis.

Physically, survivors may experience vaginal dryness, pelvic floor dysfunction, pain, genitourinary syndrome of menopause, clitoral or vulvar neuropathy and loss of sensation. Emotionally, survivors may struggle with negative or altered body image, anxiety, depression, grief or anger.

Together, these symptoms can lead to sexual dysfunction, ultimately impacting relationships with sexual partners, increasing stress and anxiety and impacting physical health overall [2]. Because of the negative toll these side effects can have on breast cancer survivors, it’s important to view sexual dysfunction as a quality-of-life concern.

What are the key barriers that prevent breast cancer patients from communicating their sexual health concerns with HCPs?

Based on research [3], I would like to highlight three main categories: provider barriers, patient barriers, and contextual barriers. Provider barriers include time constraints, knowledge gaps, and negative beliefs about discussing sexual health concerns. Providers are busy, often bouncing from room to room. Because of this, providers might be hesitant to initiate conversation when they may not have time to empathetically and thoroughly address any concerns.

While there has been a shift in recent years to include sexual wellness in comprehensive health care, providers may be reluctant to address sexual side effects, especially if it’s a topic they aren’t well–versed in, or if they are unaware of effective treatments or available community resources. A provider may also have internal negative beliefs that prevent them from discussing these concerns.

While there has been a shift in recent years to include sexual wellness in comprehensive health care, providers may be reluctant to address sexual side effects…

Patients may also struggle with sexual health conversations due to negative internal beliefs about discussing sex. They may feel uncomfortable bringing up the subject – especially if they can sense that the provider is nervous. Because sexual side effects and their underlying cause can be so nuanced – (for example, is there a lack of sexual desire due to balancing a career and managing a household or due to altered hormones from treatment?) the patient may not even realize their side effects are from treatment, thus preventing them from bringing up symptoms with their provider.

The third set of barriers are contextual, and include cultural background, sex of the provider or patient, availability of resources, and age. For example, a female patient may have an easier time addressing sexual side effects with a female provider. Additionally, younger patients are more likely to have open conversations about sexual health concerns than older patients. The myth behind this disparity? Older women are assumed to have less sex, even though – more often than not – they are open to receiving these conversations.

How can healthcare providers support breast cancer survivors experiencing sexual side effects of treatment?

According to Kim et al. [1], there are four main recommendations for health care providers to implement to ameliorate sexual side effects from breast cancer treatment:

1. Provider–initiated conversations
2. Brief and informative conversations
3. Referrals to sexual medicine experts
4. Psychosocial support

Provider–initiated conversations are a crucial step in eliminating the fear and stigma associated with discussing sexual health. When a provider openly discusses what the patient can expect, concerns are normalized, and the patient is more likely to bring up symptoms down the line. Conversations about sexual health should occur early on and continue throughout survivorship.

Provider–initiated conversations are a crucial step in eliminating the fear and stigma associated with discussing sexual health.

In addition to being backed by research, provider–initiated conversations are recommended by the American Society of Clinical Oncology. These conversations don’t need to be lengthy; in fact, research recommends brief discussions that include infographics and educational materials. Pre–visit questionnaires can be implemented to help these conversations be more succinct and individualized.

If a clinic does not have a designated sexual health team, a referral may be needed. For example, a patient struggling with genitourinary syndrome of menopause can be referred for pelvic floor therapy. Sexual health experts can also help assess concerns and educate patients on anatomy and the effect of different treatments on the body, and this is where different therapies can be introduced or considered, for example lubrication, dilators or lidocaine. When making a referral, it is important to explain why the referral is being made; this prevents the patient from feeling like their concerns are being dismissed or handed off.

In addition to physical health referrals, a breast cancer survivor may need psychosocial support to address anxiety or other mental health conditions impacting sexual health. Therapy can be essential in encouraging an open mindset and helping survivors shift their definition of sexual activity.

Medication can also be used to treat mental health concerns or estrogen deprivation symptoms. However, since SSRIs can affect sex drive, other medications including bupropion may need to be considered.

For clinics starting from scratch, what are your recommended first steps to implement sexual health screening and support?

Starting with provider–initiated conversations would be the ideal first step. To increase patient comfort and clarity, direct questions should be used rather than general questions about quality of life.

Some examples are: “It is common for women to have sexual health concerns following a cancer diagnosis and treatment. Would you like some information on this topic?” or “Have you noticed any sexual health changes or concerns? This can happen because of treatment, and we have suggestions to help.” Both examples are direct and normalize the symptoms survivors may be facing.

Another great starting place would be choosing and implementing a short questionnaire for patients to fill out before their appointment. For example, the Brief Sexual Symptom Checklist for Women (BSSC-W) is only four questions but will give the health care provider an understanding of where the patient is at.

Clinics can also assess their current processes for addressing sexual health concerns and note where changes may be needed. This could include reviewing or updating educational materials and identifying local community resources or medical partnerships for smoother referrals.

Psycho-oncology: mental health, financial hardship and sexual well-being in cancer patients and survivors

Psycho-oncology encompasses physical, psychological, social and behavioral aspects of cancer. Find out recent updates in this opinion piece.

Looking ahead, what clinical and research gaps need to be addressed to improve quality of life support for breast cancer survivors?

The research utilized in this article mainly focuses on cisgender women or individuals assigned female at birth (AFAB). Most cancer registries do not ask about sexual and gender identity, which leads to limited research on sexual health dysfunction in sexual and gender minorities (SGM).

Unfortunately, we know that SGM individuals may have a higher risk of breast cancer due to barriers to care and lower rates of screening. Overall, SGM breast cancer survivors often report poorer care than cisgender or heterosexual cancer survivors – even when controlling for outside factors [4]. As such, future research should improve data collection and ensure that SGM patients are included in studies.

It is also important to highlight the discrepancy between addressing sexual health concerns with male and female patients across the board. For example, women are significantly less likely than men with prostate cancer to discuss sexual side effects with their providers [3, 4, 5].

While innate bias could lead to these differences, a lack of understanding of female sexual dysfunction and available treatments is a significant factor. Ensuring representation of SGM patients, and having supportive and informative conversations regardless of sex, would increase quality of life for all survivors of breast cancer.

The following article by Maya Franks was based on a session at the Association of Oncology Social Work (AOSW) Annual Meeting. For more information about AOSW Annual Meeting please go to www.aosw.org

Interviewee profile:

Maya Franks, MSW, CSW is an Oncology Social Worker with Intermountain Health. In her current role, Maya works to ensure patients’ psychosocial needs are met through providing emotional support and bridging access to available resources — key steps designed to ameliorate barriers and help lighten the financial and emotional load of battling cancer. Maya has a passion for client and community advocacy, social justice and equitable policy, which she cultivated first-hand while leading a team of family advocates and working in non-profit, school and hospital settings in her previous roles. Maya received a Master of Social Work degree from the University of Utah (UT, USA) with an emphasis in child welfare.

References:

1. Kim M, Carter J, Tadros AB, Abuhdra N, Nelson J A and Stern CS. A guide for addressing sexual health in breast cancer patients. J. Surg. Oncol. 129(6), 1034–1040 (2024).
2. von Hippel C, Dibble KE, Rosenberg SM, Bollman-Jenkins M, Weiss M and Partridge AH. Self-educated and peer-recommended techniques used by women with breast cancer to improve sexual functioning during treatment and in survivorship. PloS One. 18(11), e0293298–e0293298 (2023).
3. Reese JB, Beach M C, Smith KC et al. Effective patient-provider communication about sexual concerns in breast cancer: a qualitative study. Support. Care Cancer. 25(10), 3199-3207 (2017).
4. Goldman M and Abel MK. Oncology survivorship and sexual wellness for women. Urol. Clin. North Am. 48(4), 499–512 (2021)
5. Valpey R, Kucherer S and Nguyen J. Sexual dysfunction in female cancer survivors: A narrative review. Gen. Hosp. Psychiatry. 60, 141–147 (2019).

The opinions expressed in this article are those of the author and do not necessarily reflect the views of Oncology Central or Taylor & Francis Group.