Living with Cancer-related Sexuality Changes
By Mary K. Hughes, MS, RN, CNS, CT
Quality-of-life issues such as sexuality surface as you live longer with or after cancer. But health-care providers rarely ask about these issues, causing you to think you are the only one having problems. What may surprise many clinicians is their patients’ continued interest in sexuality, given their age, illness or disability. Unlike other side effects from cancer or its treatment, sexuality issues may not resolve after years of disease-free survival. But it is not easy to talk about despite living in a culture saturated with overtly sexual images, graphic lyrics and explicit advertising.
Sexuality is a broad term including social, emotional and physical components. It is not just genitals or gender, but includes body image, love of self and others, relating to others, and pleasure. It is genetically endowed (whether a person has XX or XY chromosomes), phenotypically embodied (how masculine or feminine a person is), hormonally nurtured, not age related, but formed by experience. It can’t be bought, sold or destroyed despite what is done to a person. Sexuality includes affection, sexual orientation, sexual activity, eroticism, reproduction, intimacy, gender roles, and feelings of trust. Sexuality is limited only by imagination and physical challenges.
Expressions of sexuality include style of dress, body art, values and attitudes as well as hugging, touching, kissing, acting out scenarios or fantasies, sex toys, masturbation, sexual intercourse, oral/genital stimulation, either alone or with others. Sexual behaviors may involve oral, vaginal, and/or anal penetration. Behaviors are influenced by
- Religious beliefs
- Level of comfort with one’s body and physical functioning
- Experiences of sexual abuse and trauma
- Your partner’s wishes
- Comfort level with your own sexual orientation and gender identity.
Sexuality includes four phases: Sexual desire or libido describes your interest in sexual activities; sexual arousal causes the vagina to lubricate and the penis to engorge with blood and become hard enough to use; and orgasm is the peak of sexual pleasure. In the resolution phase, the genitals return to their normal, non-excited state. Sexual dysfunction is when any ONE of these phases doesn’t work properly. It should be remembered that sexual dysfunction is not an all-or-nothing phenomenon, but occurs on a continuum — in terms of frequency and severity. Sexual dysfunction can be a combination of physical changes and psychological/emotional discomfort with your body.
Causes of sexual dysfunction are most often treatment-related due to the physical, psychological, social changes and disruption in one or more phases of the sexual response cycle.
SYMPTOMS AFFECTING SEXUAL FUNCTIONING
Fatigue can be the result of chemotherapy, surgery or radiation therapy. Often you don’t have the energy to think about sex, much less do it. Scheduling sexual activities is a way to get around this. If you have energy in the morning, for example, have sex then.
Gastrointestinal side effects such as nausea, vomiting, diarrhea or constipation can diminish your pleasure or take away your desire. It is hard to think about kissing when you are nauseous. Take medication to decrease these symptoms before engaging in sexual activity.
Alopecia or hair loss affects how you feel about your body. It is often traumatic for women. Your body looks different without any hair anywhere, and you may feel uncomfortable around your partner until you get used to the way it looks. Wearing scarves, hats or wigs can help you feel more comfortable. For those who trim their pubic hair, hair loss in this area can be a relief. For those of you who have wondered about trimming or shaving the pubic area, you can see how you like it without having to do any work.
Scars also contribute to how you feel about your body. Sexy camisoles or teddies can help a woman feel more comfortable with her body changes. Keep in mind that people report being happy their partners are alive, and that scars don’t bother them.
Weight gain or weight loss affect body image, too. Consider buying new clothes that make you both comfortable and attractive.
Amputations can affect sexual positions. If you lose a leg, you can’t be on top, but must find alternative positions that are both comfortable and stimulating. If you have only one arm, you will probably need to be on your side or on the bottom and use the remaining hand to stimulate your partner or yourself. Make sure you manage phantom pain.
Pain can distract you from all activities, not just sex. Make sure to treat your pain before engaging in sexual activities. Women with vaginal dryness need to use water-soluble lubricants. If a woman has severe dryness, pain and itching, she may need to use a water-soluble vaginal moisturizer several times a week to increase vaginal comfort AND use lubricants during any sexual interaction.
Low libido in both men and women can be treated with testosterone, upon the advice of a doctor familiar with hormone-sensitive sarcoma. For women, this is an off-label use in the United States, but not in Europe. To get aroused, you may find it helpful to read or watch erotica, or get more affection (hugging, touching and kissing) from your partner. If a woman has had radiation therapy to her vaginal area, she may have scarring and need to use a vaginal dilator with lubricants to be able to engage in penile-vaginal intercourse.
Erectile dysfunction can be permanent or temporary, depending on the cancer treatment. Men can ask their health-care provider for oral medication, get a penile vacuum-erection device, learn to use penile injections or get a penile implant. What works for one man may not work for another.
Orgasms may change after cancer: They may be less forceful, take longer or not happen at all. Changing positions can help, as can the use of erotic devices. Depending on their treatment, some men may have less ejaculate, “dry” orgasms or retrograde ejaculations, where the seminal fluid goes into the bladder and then out of the body with urination. They continue to experience pleasure with orgasm, but it is different.
Insomnia can occur or worsen after a cancer diagnosis. It is important to get help for this so you have energy to enjoy your life. You will not be very interested in sexual activities if you can’t sleep.
Depression can happen at any time in your life, but cancer survivors have a 20 to 40 percent rate of depression. When you are depressed, you may not be interested in any activity, including sex. Seek treatment from a health-care provider.
Anxiety can keep you from focusing on sexual activities and enjoying them. It can also interfere with sleep and concentration. It is important to have this treated.
Fertility loss can be devastating. Sometimes you have the luxury of sperm- or egg-banking, but often this is not an option because the cancer needs immediate treatment. Couples need counseling to help deal with this loss and to find other options for having children. If you are single, you may feel that no one will be interested in you if you are sterile, but you would be surprised at how little this affects your dating prospects.
A factor in adjusting sexually after surviving cancer is your feelings about sexuality before cancer. Often people have a pattern of sexual behavior before diagnosis and attempt to return to it after treatment. If you have discomfort or fail to function as before, do not stop trying. The cancer experience encourages a more intimate and intense interpersonal relationship, and you can build on that as your relationship continues.
One of the most important factors in improving your sexual relationship is communication: Talk about it. Ask health-care practitioners about sexual concerns; they can address them or refer you to someone who can. You do not have to suffer in silence — help is available. If sexuality is important to you, then it should be important to your health-care practitioner, too.
Mary K. Hughes has been a clinical nurse specialist in the psychiatry department at The University of Texas M.D. Anderson Cancer Center since 1990. She is a clinical instructor in nursing at Texas Woman’s University in Houston and The University of Texas- Houston. Over the past 20 years, she has assisted patients across the cancer continuum in dealing with quality-of-life issues such as depression, anxiety and insomnia as well as cancer-related sexuality changes. She has published on these subjects and lectures internationally and nationally about quality-of-life issues of those diagnosed with cancer.