Sexual health concerns prevalent, ‘extremely distressing’ for women with breast cancer
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Women treated for breast cancer exhibited highly prevalent and distressing sexual health concerns, according to results of the WISH-BREAST study presented at ASCO Annual Meeting.
Laila S. Agrawal, MD, a medical oncologist specializing in breast cancer at Norton Cancer Institute, and colleagues sent an anonymous survey on sexual health to women with stage 0 to IV breast cancer. Researchers distributed the survey via Instagram and email lists for breast cancer survivorship groups.
The final analysis included 1,462 respondents, a majority (89.5%) of whom reported a moderate to large degree of change to their sexual health due to breast cancer diagnosis and treatment.
Results also revealed gaps in provider-patient communication, as 73% of respondents indicated they did not receive information about sexual health from their care team.
More than one-third (39%) reported not being offered treatment for sexual health issues, and a majority(83%) reported not being offered anything for decreased libido. Nearly two-thirds (63%) reported not receiving referrals to specialists, and more than half (55%) reported being told vaginal estrogen was not an option.
Eighty percent of respondents relied on social media for information about sexual health, and 62% reported they used information on social media from health care professionals.
Only 12% reported being satisfied with how sexual health concerns had been addressed.
“There’s a lot of taboo surrounding talking about sexual health. The truth is, our medical education does not really include training on sexual health concerns,” Agrawal told Healio. “Therefore, a lot of medical professionals may feel untrained or uncomfortable, or that they don’t have the resources to support patients who are having sexual health problems.”
Healio spoke with Agrawal about the study findings, the possible reasons for this gap in care, and how provider-patient communication about sexual health can be improved.
Healio: How problematic are sexual health issues after breast cancer diagnosis?
Agrawal: Sexual health changes after cancer diagnosis are really common, and they often go unaddressed. Many cancer treatments — including chemotherapy, surgery and endocrine therapy that lowers or blocks hormones — can impact sexual health. Symptoms women may experience include loss of sexual desire, vaginal dryness, pain with sex, body image concerns, and changes in intimacy and connection with partners.
Healio: Why did you conduct this study?
Agrawal: We wanted to get a better understanding about the prevalence and types of sexual health concerns women face after a breast cancer diagnosis. We also wanted to learn more about the information women with breast cancer receive about sexual health concerns. We wanted to understand if these conversations are occurring in the medical clinics and if women are turning to social media to get information.
Healio: What did you find?
Agrawal: There are high rates of sexual health changes after breast cancer diagnosis and, importantly, high rates of distress caused by these symptoms. This underscores how common the symptoms are and how important it is for health care teams to address these concerns.
Healio: What can be done to improve communication about sexual health?
Agrawal: There is a huge need for improved training in the medical education system. The majority of fellowship programs do not include information about female sexual health and formal training. This must change.
There also is a huge need to reach practicing oncologists. We need to support clinicians in having these conversations and provide them with evidence-based recommendations for patients regarding sexual health concerns.
The International Society for the Study of Women’s Sexual Health, the American College of Obstetricians and the National Comprehensive Cancer Network have issued guidelines and consensus statements regarding management of sexual health for individuals with cancer.
Healio: What advice would you give to providers to initiate conversations about this topic?
Agrawal: First, mention sexual health when talking about side effects of potential treatments. This establishes that sexual health issues are possible and opens the door to further conversations. This is not a one-time conversation, but something that needs to be addressed throughout the cancer care.
A simple way to ask about sexual health is a technique called an ubiquity statement — a statement normalizing the presence of sexual health concerns, followed by asking specific questions. For example, you could say, “Vaginal or vulvar dryness is common among people taking aromatase inhibitors. Have you experienced this?” or “ Often, sexual health or intimacy can change after cancer diagnosis. How have you been impacted?”
Healio: How can social media be used to increase awareness about this topic?
Agrawal: The majority of respondents in our survey said they turned to social media to obtain information about sexual health, and the majority were getting information primarily from health care professional accounts. This highlights that social media is perhaps an untapped resource for educating both patients and medical professionals about a topic like sexual health. Of course, we know there’s also a huge amount of misinformation on social media, so it’s more important than ever that we’re able to establish and identify trusted sources of evidence-based medical information on social media.
Healio: What are the potential implications of these findings?
Agrawal: We hope they will underscore how sexual health concerns remain prevalent, extremely distressing and largely unaddressed by medical teams. There are so many opportunities to make this better. We hope that medical training programs will include formal training on sexual health, cancer centers and hospitals will develop resources and programs like sexual health clinics — which are multidisciplinary — and individual medical professionals and patients will feel empowered to start this conversation.
Reference:
- Agrawal L, et al. Abstract 12132. Presented at: ASCO Annual Meeting; May 31-June 4, 2024; Chicago.
For more information:
Laila S. Agrawal, MD, can be reached at laila.agrawal@nortonhealthcare.org.
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