As a term, sexuality is linked to sexual functioning—the ability to engage in sexual behaviors and the body’s physiologic response—as well as sexual reproduction and fertility. But those biologic aspects are just a small part of a person’s overall sexuality. Sexual health is a state of physical, emotional, mental, and social well-being and requires a positive and respectful approach to sexuality and sexual relationships.
Sexuality encompasses a person’s sexual self-concept, including their body image, gender identity, and sexual orientation as well as their emotions about their sexuality. A person’s sexuality develops throughout their lifespan and may be influenced by culture, interpersonal relationships, and life experiences, such as a cancer diagnosis.
“Sexual health is part of patient-centered care because a cancer diagnosis does not somehow suddenly erase the sexual aspect of being a human being,” ONS member Marloe Esch, BSN, RN, OCN®, breast care nurse navigator with Froedtert and the Medical College of Wisconsin in Milwaukee, WI, and member of the Southeastern Wisconsin ONS Chapter, said. “Sexual expression continues to be an important part of pleasure and connection in disease and illness, including throughout and beyond treatment for cancer.”
Yet only about 30% of patients report being asked about how their cancer or treatment is affecting their sexuality, despite a desire to have those conversations with their healthcare providers. And clinicians are less likely to bring up the topic with female patients than males (22% versus 53%).
“Quality of life is often discussed in the context of cancer, but sexuality, one of the most important aspects of quality of life, is often left out of the discussion,” ONS member Rebecca DiPatri, BSN, RN, OCN®, oncology nurse navigator at Inova Schar Cancer Institute’s Life with Cancer in Fairfax, VA, and member of the Northern Virginia ONS Chapter, said. “This can have a direct impact not only on sexual functioning, but also sense of self and self-esteem, autonomy, mental health, and sexual and interpersonal relationships. Moreover, these can often affect one’s overall well-being, already impacted by cancer.”
Sexual Health Assessments and Conversations in Cancer Care
“Nurses must recognize sexual health as an aspect of overall health and comprehensive care, have conversations with their patients about the common treatment side effects that might affect their sexual functions, and connect them to effective strategies for managing sexual concerns,” Esch said.
Nurses can provide patients with a broad scope of sexual health support, Esch said. From a psychosocial perspective, oncology nurses can help prepare their patients for body changes and the complicated or negative feelings that can sometimes occur in response. Nurses can also provide guidance to partners about the potential impact on intimate relationships and how couples can work together to adapt. (See the sidebar for some recommended patient education resources.)
As standard practice, oncology nurses assess a patient’s whole being, including their physical, emotional, mental, and social health. DiPatri recommended that nurses include sexual health assessments in those overall well-being assessments and associated conversations.
“Because sexuality is an important part of the whole person, and an area of health that can be impacted by cancer and its treatments, oncology nurses must inform their patients of all aspects of their care, including sexual health and fertility,” DiPatri said.
Esch agreed. “Be intentional about having conversations in a way that promotes sexual recovery and focuses on adaptation, resilience, and possibility, rather than simply narrowing in on limitations or losses. We tend to center discussions around losses in functioning or lack of abilities, but I try to avoid the term ‘dysfunction.’ As nurses, we can help patients rewrite this narrative by widening the lens and shifting their perspectives a bit. We can help patients and their partners discover that ‘different’ doesn’t have to mean ‘worse.’”
Esch and DiPatri offered guidance for oncology nurses to approach patient assessments and follow-up conversations with inclusivity, such as:
- Addressing sexuality as nonjudgmentally and as free of assumptions as possible
- Sharing your pronouns and asking individuals to share theirs, but using gender-neutral language during the conversations
- Separating gender from anatomy and physiology (e.g., phrases like “people with penises” or “individuals who menstruate”)
- Allowing patients space to share their questions and concerns
- Recognizing that the conversations may be uncomfortable
- Normalizing the sexual health component of cancer care and asking permission to continue addressing their concerns
Cancer-Related Sexual Health Challenges
Oncology nurses are essential in identifying changes in a patient’s sexual functioning through assessment and can offer simple educational strategies that fall within their scope. DiPatri said that oncology nurses can advocate for patients with the oncology care team and provide referrals to specialty providers such as urologists, sexual medicine specialists, pelvic floor therapists, sex therapists, or emotional health providers to meet the needs that fall outside of their scope of practice.
“The most common sexual symptom after cancer for individuals with vulvas and vaginas is pain with sexual activity and sexual touch, known as dyspareunia,” Esch said. Dyspareunia during cancer may be related to vulvovaginal tissue atrophic changes because of estrogen loss, vaginal stenosis or scar tissue due to pelvic surgery or radiation treatments, or pelvic floor muscle disorders like hypertonicity. Esch added that the population may also experience changes in sexual desire or interest.
After cancer, individuals with penises may experience inability to achieve and maintain an erection, inability to have an erection firm enough for penetrative sex, changes in ejaculation volume or orgasm intensity, and infertility, DiPatri explained. “Any one of these concerns can lead to depression; anxiety related to sex; decreased self-esteem; fear of disappointing a partner; being unable to achieve an erection, ejaculation, or orgasm as expected or previously experienced; and shame,” she said.
DiPatri developed the What Every Man Should Know About Cancer and Sexual Health class at her institution to fill a gap in sexual health programming. With an interprofessional approach, the class is a quarterly group offering information and education on common sexual health impacts from cancer, interventions to address those challenges, and strategies to communicate sexual concerns with their oncology team.
Other cancer-related sexual health challenges include:
- Pain, mobility, neuropathies, fatigue, nausea, and other gastrointestinal symptoms such as urinary and fecal incontinence
- Changes in body image and being comfortable in their own bodies, potentially driven by experiencing alopecia; weight fluctuations; oral, vaginal, and anorectal mucositis; and the presence of central line catheters for patients undergoing chemotherapy
- Physical effects from hypogonadism and body changes related to androgen deprivation therapy or treatment-induced ovarian insufficiency
Special Patient Populations and Sexual Health
Certain patient populations may require different nursing considerations for sexual health challenges. Esch and DiPatri identified an overview for some of those patient groups.
Adolescents and young adults: Younger patients are at particular risk for sexual health challenges because of their developmental life stage. “Nurses can anticipate and mitigate as best we can the late effects of cancer treatments on sexuality and sexual health for this population,” Esch said. She regularly educates this population about cancer-related sexual health topics in a series of articles for the adolescent and young adult publication Elephants and Tea.
Older patients: Esch and DiPatri emphasized that sexual health concerns are a factor for patients across the lifespan and that nurses should not underestimate older adults’ sexual needs and desires. “Although sexual functioning may look different across the lifespan, it is just as important to assess for challenges and concerns from patients and partners in older age groups,” DiPatri said.
Patients who identify as LGBTQIA+: Nurses use an individual, patient-centered approach with all their patients, but it’s especially important for those who are lesbian, gay, transgender, queer, questioning, intersex, asexual, and more (LGBTQIA+). Sexual and gender minority populations face social and structural inequalities that lead to disparities in healthcare access and quality as well as disproportionately poor health outcomes, Esch emphasized. DiPatri added that the patient population has a unique set of needs and would benefit from trained and allied providers and clinics to support them throughout their cancer experience.
“As nurses, we can do the work to grow our own cultural humility, dismantle our implicit biases, and create cultures of safety for all individuals,” Esch said. “This begins with our face-to-face interactions with patients: degendering our language, asking and using a person’s correct pronouns, and acknowledging sexual and gender diversity as normal variations within human sexuality. We should encourage inclusivity in the forms that we use, the spaces that we ask patients to use, and our overall organizational culture.”
Patients receiving palliative and end-of-life care: Sexual health may be an afterthought in advanced cancer diagnoses, when the focus of care transitions from cure to palliative or hospice. However, Esch explained that romantic and sexual intimacy is a way for patients to cope with that transition, and oncology nurses should suggest appropriate ways for patients to engage their sexuality in that phase and afford them the privacy and the opportunity to do so.
Cancer survivors: “We often see distress among survivors because of unexpected ongoing sexual changes, even if they are short term,” DiPatri said. “Distress related to sexual health often presents more frequently in survivorship than it does during treatment.”
“It’s often only after the transition to the survivorship phase of care when survivors realize that certain aspects of their sexual lives are not returning to the normal they’d hoped or expected,” Esch said. “This is important for us as nurses to remember because it highlights the need to inquire regularly about a person’s sexual health throughout the treatment trajectory and into survivorship.”
Evidence-Based Recommendations for Sexual Challenges
Esch explained that in general, a biopsychosocial approach is typically effective in caring for patients’ sexual health. “This means addressing the physiological symptoms or concerns as well as the cognitive, emotional, and interpersonal contributing factors to sexual problems after cancer,” she said. “Sexual functioning involves both a physiologic component as well as a subjective or cognitive component, and interventions should focus on all of the potential contributing factors to sexual problems.”
For example, Esch explained that dyspareunia may begin initially from a physical cause, but after repeated discomfort, the trigger becomes cognitive because patients anticipate or associate sexual encounters with pain, contributing to a cycle of distress and avoidance.
DiPatri and Esch identified several other evidence-based recommendations for sexual health that oncology nurses can follow to provide patient-centered care (see sidebar).
Overcome Barriers to Cultivate Understanding and Support
“Oncology nurses need to take the time to acknowledge our own barriers, both perceived and real, to having conversations about sexual health,” DiPatri said. Some of those may include discomfort discussing sexual health, gaps in provider education, language barriers, lack of awareness of who should take ownership of sexual health discussions, and uncertainty of the education’s appropriate timing. “Remind yourself that sexual health is just another component of health and well-being that you assess on a regular basis,” DiPatri said.
Esch and DiPatri recommended that oncology nurses practice an open-ended dialogue with other nurses and interprofessional colleagues, as well as their patients. They suggested starting with prompts such as:
- “We have talked a lot about your cancer, treatment, and potential side effects. One of the more sensitive topics that is not often addressed, but very important, is how cancer might be affecting your sexual health. After a cancer diagnosis or treatment, many people report changes in sexual functioning. Is this something you would like to know more about?”
- “I want to help find the answers to any questions you have about changes to your sexual health or intimate relationships. Is there anything we could begin to address today?”
You can enhance your clinical practice by incorporating even very basic sexual health assessments and interventions and simply bringing up and providing space for discussing patient’s sexuality concerns. Be inclusive of all patient populations, check for understanding, use simple and normalizing language, and avoid implicit bias. (See the sidebars for additional ideas and recommendations to incorporate in your practice.)
“Giving our patients and partners permission to inquire, share, learn, and even grieve losses about sexual health and intimacy are at the core of the holistic oncology care we provide,” DiPatri said. “Earlier in my career, sexual health and intimacy were never really considerations that I routinely addressed or even was comfortable with assessing, but I realized how important and often overlooked those components of well-being are, especially during a time in life when intimacy and connection are pieces that help our patients through their cancer journeys.”
“As oncology nurses, we can help patients manage and resolve a lot of common sexual concerns with nursing interventions such as anticipatory guidance, education, and counseling,” Esch said. “But remember that you don’t need to have all the answers. Having a good understanding of available resources and options for interprofessional referrals allows you to feel confident that you can successfully navigate patient concerns and provide them with the support they need to manage any problems that are identified.”