Altered sexuality and intimacy are among the top quality-of-life issues cited by cancer survivors posttreatment, according to Sage Bolte, PhD, LCSW, Chief Philanthropy Officer and President, Inova Health Foundation.
“This is a tremendous loss that we don’t validate enough,” she said. Patients have a tendency to minimize the loss of sexuality and intimacy because they think they should “just be grateful to be alive.” According to Dr Bolte, patients shouldn’t have to justify that loss, and navigators are in a unique position to be with people in that grief and to give them hope.
Many of the issues that affect sexual function are much longer lasting than other cancer treatment side effects and often are not seen until years after treatment, as patients might not feel up to exploring their sexuality for some time and may not even realize any issues have arisen. But the distress related to these changes is real and measurable and can persist for years. At the AONN+ 10th Annual Navigation & Survivorship Conference, Dr Bolte discussed ways that cancer and its treatments impact the sexual self and offered evidence-based interventions to improve patients’ sexual functioning.
She pointed out that issues related to sexual dysfunction are not only referring to the obvious culprits like erectile dysfunction, vaginal dryness, and inability to orgasm, but also to issues that influence the desire to be intimate, such as dry mouth or odor from a tracheostomy.
“Have you ever tried to kiss someone with dry mouth? Have you ever been kissed by a cat? It’s the same thing,” she said. “You can imagine how this would further exacerbate the desire to be sexually intimate. These things affect the way we feel, which then influences our sexual behavior.”
Physiologic, Psychological, and Social Changes After Cancer
Cancer itself can have a direct impact on sexual function, and cancers of the sex organs can make sex uncomfortable or even impossible for some, but cancer therapy can have an equally profound effect.
In men, neurovascular damage from chemotherapy agents, radiation, or surgery can result in erectile disorder. Endocrine changes are not confined to men with prostate cancer and are often overlooked in men with other cancers, but decreased testosterone is common after cancer treatment and can lead to decreased libido. The possibility of becoming infertile can also cause significant distress, even among men who have never expressed a desire to have children.
Issues related to sexual functioning in women are not always obvious. “Chemo dries people out, so of course women are going to complain of vaginal dryness,” she said. “But if their skin is so dry and itchy that it’s all they can think about, of course they’re not going to be sexually interested.”
Treatment side effects like chemo brain, joint discomfort, neuropathy, and hair loss may not be immediately associated with sex, but they can lead to significant sexual dysfunction. Hair is associated with beauty for many women, and losing hers might make a woman feel sexually unappealing; a woman who is distracted by the pain and tingling in her hands and feet will not likely be able to feel present when being sexually intimate with her partner. Radiation to the pelvis can aggravate the bowels; if a person is afraid of fecal or bladder incontinence, he or she is likely not eager to have sex.
“Think about how hard it is to feel something good when what you feel overwhelmingly is something painful,” she said. Managing these physical side effects is crucial to maintaining sexual function, and navigators have a unique opportunity to talk about these issues at patient assessments. “If we can have a conversation about poop, we can have a conversation about sexual health,” she said.
Acute or premature ovarian failure can be devastating to a woman. For a younger woman, the consequences of medically induced menopause (infertility, vaginal dryness, change to vaginal tissue, hot flashes, mood changes) can have a profound psychological effect. This kind of loss can be tremendous.
Surgical scarring, lymphedema, weight loss/gain, and changes to appearance can impact self-esteem and confidence, and in turn, sexual functioning for both men and women. Ongoing fatigue and decreased physical stamina can also make the act of sex too physically taxing for some individuals to even want to engage.
“If someone gets fatigued walking to the mailbox, they’re probably not thinking about sex,” she said.
The psychological distress that partners experience can be equally as challenging as in those who have been diagnosed with cancer. For example, a woman’s husband may be trying to respect her space and body after treatment, but she may misinterpret this as him no longer finding her attractive.
“Maybe the last time he tried to approach her it was a little too soon, he held her a little too tight—those expanders don’t feel good—and she swatted his hand away,” she said. “Smart partners only need to be swatted once. Sometimes our gift to our patients is just opening that conversation.” And if a couple was having problems communicating before cancer, a diagnosis will do them no favors. These conversations are challenging, and patients often need help broaching them.
Emotional distress in the form of depression and anxiety is 15% to 25% higher in people with cancer than it is in their peers. But it is important to keep in mind that treating these issues with selective serotonin reuptake inhibitors (SSRIs) can impact sexual dysfunction even more severely, so consider other nonpharmacological options when feasible. “SSRIs work really well to treat these symptoms, but they also do a doozy on sexual function,” she said.
In LGBTQ people, avoid making assumptions about sexual activities, relationship status, and fertility concerns. Many individuals in this population may already have distrust in the healthcare system, and this only exacerbates that problem.
Interventions Addressing Sexual Health
Issues pertaining to sexuality are too often ignored in the cancer setting, but this is often due to a lack of knowledge and confidence on the part of providers. However, research shows that the vast majority of patients want to talk about these issues.
According to Dr Bolte, issues of sexuality should be integrated into daily practice assessments. The National Comprehensive Cancer Network Distress Thermometer can be used to segue into a conversation about a person’s sexual functioning. If the patient is experiencing significant pain, asking how this is affecting their intimate relationships allows for further conversation. Questionnaires like the Cancer Rehabilitation and Evaluation System can be used in a similar way to assess sexual functioning.
Questionnaires more specific to sexual functioning also exist, such as the International Index of Erectile Function and the Brief Index of Sexual Functioning for Women.
Information about sexual history and trauma should always be collected. If a person has been raped, sexually assaulted, or received unwanted touch in the past, it is possible that a provider might unknowingly retraumatize that patient. Asking permission to touch (“Is it OK if I undo your gown?”), and asking questions about a patient’s sexual history are crucial to avoiding retraumatization, particularly among patients with pelvic, rectal, or breast cancers.
“Asking these questions is not going to retraumatize them, but touching them without asking could,” she said.
The Ex-PLISSIT model is an invaluable tool for assessing sexual health. The letters of the name refer to the 4 different levels of intervention that a provider can apply: permission, limited information, specific suggestions, and intensive therapy. According to Dr Bolte, the vast majority of patients will not require the intensive therapy step.
Using the model, first obtain permission to initiate sexual discussion and legitimize sexual concerns. This doesn’t mean overtly asking for permission to initiate the conversation, she noted, but using relationship-neutral language, inform the patient/partner that discussion of sexuality is part of routine assessment. Be aware of cultural and religious issues, and inquire about their previous sexual trauma/history. Ask how their illness has affected their sexual self and relationships.
If the patient expresses some concern (eg, sex is painful), normalize the conversation and offer limited information in the form of a specific, quick tip: “Are you using vaginal moisturizers or lubricants?” Directing the patient to resources can also help.
Specific suggestions take a bit more time and might require a follow-up appointment or referral to another provider. Provide prescriptions (or sample products) as needed/available, and include the partner in these discussions, as this facilitates communication between the couple and normalizes potential problems.
“Low Desire” Is Not “No Desire”
Low sexual desire is common, particularly among women. “But low desire does not mean no desire, and no desire does not mean no desire, because if they’re bringing up the fact that they have no desire, they desire to have desire,” she joked. “But it’s our job to remind our patients that desire is a head thing, not a body thing. Usually counseling and education is the very best tool.”
Grief counselors can also play an important role in helping women deal with the loss of what was, and redefining the new of what can be. “You don’t need to be a sex therapist to do that,” she said.
If anxiety or depression are causing low desire, treat those first. In the absence of these or other sexual dysfunction and medication comorbidities, low desire can be treated with cognitive behavioral therapy (ie, fantasizing, relaxation training), prescription drugs like flibanserin, or hormone replacement therapy.
Vaginal health is not only about sex; it can also help with issues like incontinence. Dilators can help maintain pelvic floor strength, and moisturizers (Replens, HYALO GYN; moisturize once every 3 days), lubricants (to be used during sexual activity), and coconut oil or vitamin E oil can help to maintain vaginal health and elasticity. Vaginal dryness and dyspareunia can be treated with topical or systemic estrogen, with a prescription for dryness (ie, Osphena), or with treatments such as MonaLisa Touch, a carbon dioxide laser specifically designed to treat vaginal tissue (although not yet approved by the FDA for this indication).
Erectile dysfunction can be treated with prescription phosphodiesterase enzyme inhibitors like Viagra and Cialis, vacuum devices, and testosterone therapy (if allowed), but counseling also plays a vital role. Normalizing the issue with men (helping them realize a full erection is not required for most sexual activity or orgasm) can make a significant impact. This is, oftentimes, new information for them. Warning men ahead of time about these potential issues can also help them to mentally prepare. Many men claim that having not been told about these issues was the worst aspect of dealing with them.
“Early and often is the best intervention for erectile dysfunction,” she said. “But remember that Viagra does not fix marriages; it does not help a depressed man feel more sexual; it does not help a depressed man get an erection. You have to be in the game, mentally, for it to work fully.”
Relaxation techniques (sensate focus exercises, massage, deep breathing), prolonged foreplay, verbal and nonverbal communication, and a focus on intimacy over intercourse can alleviate performance anxiety in individuals when they’re ready to reinitiate sexual activity.
Sexual health is about more than intercourse, penetration, and orgasm. According to Dr Bolte, maintaining positive sexual esteem, intimacy, and sexual function after cancer is about normalizing the topic, discussing issues of intimacy and sexuality pretreatment early and often, and redefining the new normal.
“The most important sex organ we have is our mind, and the largest sex organ is our skin,” she said. “Cancer can’t usually take all of that.