Sexuality is an important part of life that contributes to overall well-being. Getting a cancer diagnosis, undergoing treatment and becoming a survivor can affect sexual desire and function. Surgery, radiation and chemotherapy not only alter the body, but they can also change how patients—and their partners—feel about their bodies and about sex.

 

“Sexuality is not synonymous with sexual activity. It covers intimacy, desire, arousal, orgasm and satisfaction,” says Don Dizon, MD, director of the Pelvic Malignancies Program and the Sexual Health First Responders Clinic at Brown University Health Cancer Center. “When it functions normally, we don’t think about it, but when something negatively affects who we are sexually and how we experience pleasure, it can be quite distressing.”

 

Research suggests that as many as 90% of people with breast, gynecological or prostate cancers experience difficulties with sexual desire or function. For women, the most frequently reported problems include vaginal dryness or atrophy and pain during intercourse (dyspareunia). For men, erectile dysfunction is a common problem. People of any gender may experience loss of sexual desire (libido) and difficulty reaching orgasm.

Don DizonCourtesy of Don Dizon

 

Treatment for breast, cervical, ovarian or prostate cancers may involve removal of the ovaries or testes or use of hormone therapy to slow the growth of tumors with estrogen, progesterone or androgen (male hormone) receptors. This can put younger women into sudden menopause and can cause numerous side effects for postmenopausal women and men as well. In an effort to prevent cancer recurrence, such treatment may last for years.

 

But sexual problems are not only a concern for people with cancers that affect the reproductive system. Surgery or radiation for any type of cancer in the pelvic region can lead to scarring and damage to organs, nerves and blood vessels that play a role in sexual function. Treatment for anal cancer can impact the sex lives of gay men and others who enjoy anal sex. Some people with bladder or colorectal cancer will need an ostomy bag to collect urine or feces. One bright spot, however, is that the recent trend toward active surveillance, less invasive surgery, more targeted radiation therapy and lower medication doses can lessen negative outcomes.

 

Beyond the direct physical effects, cancer and its treatment can also take an emotional toll. Chemotherapy, other cancer medications and radiation can cause side effects such as fatigue, nausea and pain that can leave people uninterested in sex. Hair loss or weight changes due to chemotherapy or removal of a breast can lead to self-con­sciousness or a poor body image. And simply facing cancer can trigger stress, insomnia, anxiety and depression, all of which can kill the mood.

 

Often, the cancer experience brings couples closer together, but sometimes it can drive them apart. Partners might have a hard time understanding a lack of sexual interest and may need time to adapt to changes in appearance and function. Some partners may withdraw emotionally or fear that sex will cause harm. What’s more, changing roles—for example, when a spouse becomes a caregiver—can affect sexual relationships. Single people may have concerns about when to bring up cancer while dating, and they may be hesitant to start new relationships if their prognosis is uncertain.

Annie SprinkleKingmond Young

 

“Sometimes cancer can make a relationship stronger. My partner was so loving and supportive, I fell more in love. But for some, it’s a deal-breaker,” says Annie Sprinkle, PhD, a former adult film star and current performance artist who holds a doctorate in human sexuality. “Cancer is going to change you. You have to accept that, and your partner has to accept it.”

Sprinkle was diagnosed with early breast cancer about 20 years ago and had lumpectomies, radiation and chemotherapy, which caused “instant menopause.” Years later, when she got scans after a car accident, doctors found signs of lung cancer, and she underwent surgery again. In characteristic fashion, Sprinkle and her partner, University of California Santa Cruz art professor Beth Stephens, PhD, made cancer a theme of their art.

Cancer patients and survivors can take steps to improve their sexual desire and function before, during and after treatment. Patience, experimentation and communication are keys to a better sex life.

Annie Sprinkle and her partner, Beth Stephens, shaved their heads during chemotherapy.Courtesy of Annie Sprinkle

 

For women, estrogen replacement therapy may improve menopausal symptoms, but this is often not possible for those with hormone-driven cancers. Estrogen creams or vaginal rings can relieve dryness and irritation without increasing the risk for cancer progression or recurrence. A recent study showed that Addyi (flibanserin), a drug that helps balance neurotransmitters in the brain, improved sexual desire, arousal and satisfaction for women with breast cancer. Modern breast surgery techniques are less likely to cause lasting changes in mobility and sensation. Most women have reconstructive surgery after breast removal, but going flat is also an option.

 

For men, decisions about testosterone replacement therapy to revive a flagging libido can be a balancing act between managing symptoms and minimizing the risk of cancer recurrence. For some men, drugs like Viagra (sildenafil) or Cialis (tadalafil) are effective for treating erectile dysfunction. Penile injections, inflatable implants or vacuum pumps may also be an option. Some experts recommend “erectile rehabilitation,” or regular use of medications and vacuum pumps to achieve an erection even when sex is not desired.

 

For everyone, eating a balanced diet, getting enough exercise, maintaining a healthy weight and getting adequate sleep contribute to overall quality of life, including sexual well-being. Studies have shown that aerobic exercise, pelvic floor exercises, yoga and meditation can help improve libido and sexual function. Exercises that strengthen the pelvic muscles, in particular, can reduce pain during intercourse, prevent urine leakage during sex and lead to firmer erections.

 

Time and patience can go a long way. Some sexual symptoms are likely to improve after treatment is completed. Nerves and blood vessels injured by surgery or radiation can sometimes repair themselves, but this can take months or even years. Give yourself time to heal before resuming vaginal or anal sex. Due to a waning libido, sex may not be as spontaneous as it used to be. You might need to plan ahead for when you have more energy or to give erectile dysfunction meds time to work. Adapting to physical and emotional changes can be a prolonged process for both the person with cancer and their partner.

 

“I like to say, the only answer to any question about sex is, ‘It depends.’ That’s spot-on when it comes to sex and cancer,” Sprinkle says. “Parts of your body might be numb or nervy or have scar tissue, or you can’t have weight on top of you. Forget everything and do it your way. There’s no right way—there’s just what works for you.”

 

Experimentation is key. Before resuming sex with a partner, it might be helpful to explore your own body and its changing sensations to figure out what feels good—or doesn’t—now. Tune in to novel sensations, and try new positions that might be more comfortable. Some people may choose to wear sexy clothing to hold a breast prosthesis in place or cover a chemo port or ostomy bag. Lubricants can relieve vaginal dryness—many different types are available. Likewise, there’s a wide variety of vibrators and other sex toys to try. Men who are unable to have an erection can usually still experience sexual sensations and learn to achieve orgasm without ejaculation. If intercourse is not possible, explore other ways to maintain intimacy. Your sex life may be different than it was before cancer, but it can still be pleasurable.

 

“Sometimes people have too narrow a definition of sex,” says Sprinkle. “Get out of the idea that sex is only about intercourse. Find what turns you on. If nothing does, at least have sensual pleasure, like massage or cuddling. Anything can be sex if it gives you pleasure or you find it sensual or erotic. Your sex life can become your pleasure life.”

 

Open communication is among the most important factors, both between partners and between people with cancer and their health care providers. Talk to your partner about how you’re feeling physically, mentally and emotionally. Discuss what you want out of your sex lives and how to satis­fy both of you. If this is difficult, a marriage or couples counselor or sex therapist might be able to help.

 

Early in your journey, have frank discussions with your care team—doctors, nurses, mental health therapists and social workers—about how cancer and its treatment could affect your sexual well-being and how to prevent or ameliorate problems. Some cancer centers have sexual health specialists and offer sexual rehabilitation programs. Forewarned is forearmed.

 

Unfortunately, a majority of cancer patients report that they did not receive adequate sexual health information before, during or after treatment. In part, this is due to a stereotype that older people are not interested in sex. Finding appropriate information can be especially challenging for gay, lesbian, bisexual and transgender people. For their part, most oncologists say they never received training in managing sexual problems. Patients often say they don’t want to make their doctors uncomfortable, while doctors say they don’t want to make their patients uncomfortable. Don’t be afraid to make the first move.

 

“Sexuality does not have to be another part of one’s life ‘lost’ to cancer,” says Dizon. “To avoid conversations around sexuality after cancer robs people of the opportunity to fully participate in a domain that defines us as human beings.”