For example, you might say, ‘Some patients may experience changes in their sexual desire.... If you notice any changes, please feel free to talk to one of us about your concerns.
—Sage Bolte, PhD, LCSW, OSW-C
Studies show virtually all cancer survivors will experience some form of sexual dysfunction following a cancer diagnosis and treatment. Yet few cancer survivors seek help for physical problems they may be experiencing, such as vaginal dryness, dyspareunia, chemically induced menopause, reduced libido, erectile dysfunction, or for psychological distress caused by changes in body image, depression, anxiety, and the inability to achieve arousal and orgasm. And few physicians broach the subject of how cancer treatment, including surgery, chemotherapy, hormonal therapy, bone marrow transplantation, and radiation therapy, may impact their patients’ sexual health.
Sexual health is often left out of the conversation between patient and physician after a cancer diagnosis for many reasons, including embarrassment and the primary concern of curing the cancer. Sage Bolte, PhD, LCSW, OSW-C, an oncology counselor at Life With Cancer, a program of the Inova Comprehensive Cancer and Research Institute, Fairfax, Virginia, said unresolved sexual dysfunction raises levels of distress and anxiety among cancer survivors and lowers their quality of life. This is especially true in young adult survivors who may not be sexually experienced enough to recognize the signs of sexual dysfunction caused by their treatment and raise the issue with their oncology team.
The ASCO Post talked with Dr. Bolte about how oncologists can better inform patients of the potential sexual health problems associated with cancer therapy and provide resources to help patients resolve or manage symptoms.
Reason for Prevalence
Why is sexual dysfunction so common among cancer survivors?
Limited research has revealed two major reasons why patients don’t initiate conversations about sexual health (and consequently don’t get help): They don’t want to make their health-care provider uncomfortable, and they don’t believe there is a solution to their problem. For example, a woman may be told that she will go through menopause as a result of her therapy and interpret that as, “There is nothing I can do about it.”
Moreover, although we are bombarded with commercials about warming vaginal lubricants and pills for erectile dysfunction, sexual health is still a very private and personal matter. If something is wrong, we may have feelings of embarrassment and sometimes shame about being broken, or we believe the problem can’t be fixed.
Also, immediately after a cancer diagnosis, sex is often the last thing on patients’ minds, because they are rightly concentrating on getting rid of their cancer, and they think they will be able to resume their sexual life after cancer. That is why sexual dysfunction is so distressing to many of our patients—because usually they can’t return to the sexual life they had before.
Of course, the main concern for oncologists is to quickly rid patients of their cancer, so unless the cancer is affecting a sex organ—such as prostate cancer, where conversations about erectile dysfunction are common because it is often a result of treatment—sexual health usually doesn’t come up. As a result, patients with head and neck and hematologic cancers, for example, are often overlooked when it comes to this issue, and the distress in those patients is higher.
Younger vs Older Survivors
Does sexual dysfunction caused by cancer treatment affect younger and older survivors similarly?
We don’t have enough comparative data to know exactly how the problem differs in younger and older survivors of all cancers. We do know that younger patients are likely to have fewer sexual experiences or time to establish their sexual identity and may not know what is normal for them in terms of sexual health.
For example, if a young woman is experiencing vaginal dryness and had not been engaged in sexual activities prior to her diagnosis, she may not realize that her vaginal dryness is abnormal and tell her physician that she is experiencing pain during intercourse. Or a young male survivor may not recognize erectile problems.
If young adults aren’t aware of what is sexually normal for them, they don’t have the information to even ask about solutions. When young adults are aware of sexual function changes, their psychological distress is higher. And shame on us as health-care providers if they are left to feel more isolated and alone because we didn’t give them information upfront about what to expect.
Older survivors typically have enough experience to recognize sexual dysfunction. Further, they may be more creative in solving the problem because they may already have been experiencing changes in sexual function before their cancer diagnosis and had time to adjust to problems like vaginal dryness or erectile dysfunction. However, this does not mean that older adults do not experience psychological distress regarding changes in their sexual health. Maintaining sexual health is an important component in quality of life, regardless of age.
Fully Informed Consent
What can oncologists do to raise patient awareness of potential sexual health side effects due to treatment?
Sexual side effects of treatment should be part of informed consent and discussed with the same level of detail as other possible side effects. When a woman is told that there is a risk she will go through medical menopause because of her chemotherapy, she may not really understand what that means and may not have enough information to ask, “What does that mean for me?”
We usually tell patients they may have hot flashes or weight gain, but we often don’t explain that there could be vaginal changes, including vaginal stenosis and vaginal dryness, low libido, and painful intercourse, so we’re not providing patients with fully informed consent.
The informed consent process should include the informational component of potential side effects of treatment and normalizing language to explain them. For example, you might say, “Some patients may experience changes in their sexual desire, the way they feel about their body, changes in erectile function, or vaginal changes. If you notice any changes, please feel free to talk to one of us about your concerns.”
I know it is unrealistic to think that health-care providers can do all of the education about how to manage these symptoms in the upfront setting. But it is important to acknowledge potential sexual side effects and give patients permission to talk about their sexual well-being.
There is a model of sexual assessment I teach called Ex-PLISSIT (permission, limited information, specific suggestions, and intensive therapy).1 Seventy percent of oncology patients are only going to need the first three parts of that model: permission, limited information, and specific suggestions. For example, in packets of treatment information given to patients, oncologists can include fact sheets on managing sexual side effects or managing body image changes (see sidebar).
It is also helpful if hospitals or private practices have a specific person on staff—for example, a nurse or social worker—with some training in sexual health. This designated person should have a list of resources handy, including the names of sex therapists, pelvic floor specialists, urologists, endocrinologists, and gynecologists, to give patients. An oncology-certified social worker can also be found through the Association of Oncology Social Work (www.aosw.org).
Survivorship care plans should include a sexual health component with information regarding who to see about ongoing sexual health issues, whether they are psychological or physiological.
What can physicians do to make the conversation about sexual health comfortable for their patients?
The most important thing is body language. Are you standing over the patient or are you sitting next to the patient (or a little bit lower) to put yourself on the same level as you begin the conversation? It’s important to be mindful of the setting.
You might begin by giving general information, such as, “Patients diagnosed with cancer often experience some change in their sexual desire or sexual function because of the treatments and/or because of the emotional distress the diagnosis causes.”
You can follow this with specific information, such as, “Eighty percent of patients diagnosed with ovarian cancer or cervical cancer experience some change in vaginal integrity. Here are some things you can do about it.” Alternatively, you might add, “Here is the name of a person you can talk to, or at your next appointment, I’d like you to spend time with our nurse so she can educate you about what you can do proactively to help manage your sexual side effects.”
If we wait for the patient to tell us about the sexual problems he or she is having, it means the issue has already settled in. ■
Disclosure: Dr. Bolte reported no potential conflicts of interest.
1. Taylor B, Davis S: Using the extended PLISSIT model to address sexual healthcare needs. Nurs Stand 21(11):35-40, 2006.
American Association of Sexuality Educators, Counselors and Therapists—aasect.org
American Cancer Society—Sexuality for the Woman with Cancer; Sexuality for the Man with Cancer—cancer.org
Leukemia & Lymphoma Society—Sexuality and Intimacy Fact Sheet: lls.org