What do up to 60% of cancer survivors have in common? Answer: some type of long-term sexual dysfunction. How many cancer survivors seek professional help for sexual problems? Answer: less than 20%. Even when they do seek help, they may not be successful in finding professionals with expertise in sexuality for cancer survivors. Furthermore, many of those services are uninsured.
No oncology specialty is specially trained to address sexual dysfunction. It is a ‘hot potato’ issue, with doctors claiming nurses are responsible and nurses thinking it is the oncologists’ responsibility.— Leslie R. Schover, PhD
Leslie R. Schover, PhD, addressed these challenges during a recent webinar sponsored by the American Psychosocial Oncology Society (APOS).1 Dr. Schover, formerly affiliated with The University of Texas MD Anderson Cancer Center in Houston, is founder of www.will2love.com, a website devoted to sexual health and fertility for cancer patients.
“Sexual problems are among the top five unmet needs listed by cancer survivors. Often when they try to find help, they are unsuccessful. No oncology specialty is specially trained to address sexual dysfunction. It is a ‘hot potato’ issue, with doctors claiming nurses are responsible and nurses thinking it is the oncologists’ responsibility,” Dr. Schover said.
Although sexual dysfunction is a neglected topic, it has a major impact on the quality of life and mood of cancer survivors. For younger patients, reproductive health and potential options for preserving fertility need to be addressed. Some of the larger comprehensive cancer centers have designated professionals who can help with making reproductive decisions, but these services are mainly clustered on both coasts, and many areas of the United States lack such resources.
Sexual problems are common for survivors of two of the most common cancers: breast and prostate cancers. Prostate cancer patients often have unrealistic “sexpectations,” Dr. Schover said. “They are told that they have an 80% chance of maintaining erections posttreatment, but the truth is that only 20% to 25% of men will be able to have erections that are strong enough for sexual intercourse over the long term,” she said.
“Women who have breast surgery may have good cosmetic results with reconstruction, but they also lose all erotic sensation in their breasts, and they often fail to anticipate what this loss will mean,” she added.
Talking About Sex
Surveys show that oncology professionals recognize the importance of sexual function for their patients, but most of them are uncomfortable about starting the discussion. They often resort to “medicalese”—jargon that may go over the head of the patient and does not encourage discussion.
“It is important to get comfortable talking to patients at high risk of sexual dysfunction,” Dr. Schover emphasized. “Sexual problems are pervasive, severe, and persistent and can include low libido, lack of pleasure, vaginal dryness, pain on intercourse, trouble reaching orgasm, incontinence that interferes with sex, and erectile problems. These issues rarely go away without treatment.”
In thinking about how to discuss sex with patients, survey results are enlightening. “Surveys consistently show that the health-care professional is focused on medical terminology, whereas patients’ concerns are wider and include the impact of sexual problems on the relationship, body image, and self-concept. After cancer and its treatment, patients have to adjust to the “new normal.” In discussions with patients, “get them to refocus and think about noncoital sex as normal and pleasurable,” she said.
Role-playing with colleagues or friends can help gain a level of comfort in initiating and holding discussions about sex with patients. “Rehearsing will help relax you. Play the role of the patient, and then play the role of the health professional,” she suggested.
Open-ended questions will fuel a discussion. She advised using simple understandable language and bringing up the discussion with a statement like, “Sexuality is an important part of survival. How is that going for you?” or “Many women have pain during intercourse or a loss of desire. How has your cancer and treatment affected you?”
“Normalize the discussion of sex as part of the visit,” she added. “Don’t use jargon.”
Who should bring up the discussion of sex with patients? According to Dr. Schover, the person could be a team reproductive specialist, nurse, social worker, physician assistant, or psychologist. “Even in a small oncology practice without these resources, anyone willing to learn about the subject can bring up the discussion. Also, it is important to have materials available for patients. I believe the discussion of sex should be brought up in the context of quality of life,” Dr. Schover advised.
Start with the easiest topics, like vaginal dryness. Don’t be judgmental, and always preface statements with a normalizing statement, such as “Cancer survivors typically face sexual adjustments.” Be mindful about lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) issues, and never assume that every patient is heterosexual, she continued.
“Counseling is a process. Bring up the discussion at the initial visit, and reassess at each subsequent visit. You may have to ‘play the same tape’ three times,” she said.
Screening for Problems
Short questionnaires, such as the PROMIS® (Patient-Reported Outcomes Measurement Information System) Brief Sexual Profiles, are useful for screening patients. However, Dr. Schover said, a common pitfall is failing to review the responses. “If you get questionnaires filled out, you must follow up and not ignore the response,” she stated.
The Female Sexual Function Index and the International Index of Erectile Function are used by some practitioners, but she prefers the PROMIS measures. “We focus too narrowly for men on erections, ignoring problems with desire, orgasm, or pain,” she noted.
“No questionnaire can replace taking the time to obtain a full sexual history, and that includes asking whether the patient has ever been coerced to have sex and whether he or she had been able to fully enjoy sex before cancer,” Dr. Schover continued.
The history should also include questions about sex and cancer: How has a diagnosis of cancer affected your view of sex and your actual sex life? What worries you most about sex? What questions do you have? Would you like help for sexual problems for yourself and/or your partner?
Building a good referral network is key for patients identified as being at high risk for sexual dysfunction. “This is not always easy unless you work in a tertiary care center or in a large city with many medical specialists,” she noted.
She suggested enlisting interested gynecologists, oncologists, and urologists to learn more about sexuality and cancer and promising them referrals for cancer-related dysfunction. In an ideal world, one’s referral network would include front-line clinicians, mental-health professionals with expertise in sexuality and cancer, and gynecologists and urologists with expertise—all linked in a multidisciplinary approach to find treatments and interventions that are helpful.
More information can be found on Dr. Schover’s website—www.will2love.com—which includes blogs, forums, resources, wellness information, and interactive self-help exercises. ■
Disclosure: Dr. Schover is the founder and owner of Will2Love, which is a for-profit digital health startup.