ROBERT GINYARD started getting regular prostate cancer screenings when he was in his early 40s. As an African-American whose father had been diagnosed with prostate cancer, Ginyard had long been told he had a higher-than-average risk of developing the disease and should get checked. In 2010, when he was 48, a blood test revealed a jump in his prostate-specific antigen levels. His doctor sent him to a urologist, who performed a biopsy that revealed stage II prostate cancer.
Ginyard, now a 56-year-old entrepreneur in Baltimore, listened as his medical team walked him through his treatment options and their possible side effects, including the potential for erectile dysfunction and other problems related to sexual activity. But Ginyard wasn’t thinking about sex. “The only thing that was on my mind was to get rid of the cancer,” he says. “The side effects I would deal with later.”
After consulting with his doctors, Ginyard underwent a nerve-sparing radical prostatectomy to remove his prostate, with the hope of preserving his urinary and erectile functions. Following the surgery, he received radiation treatment five days a week for eight weeks and underwent hormone therapy, which included Lupron (leuprolide acetate) and bicalutamide, for four months. He says his libido took a nosedive during the time that he took hormone therapy.
Ginyard was stunned by the diagnosis and its sexual aftereffects. Part of his difficulty stemmed from feeling there was nothing he could control, so he began talking with his wife, Karen, about what he was going through. “We are pretty good at being open and honestly communicating with one another,” he says.
Sex after cancer can present challenges, particularly for those who have cancers affecting the sex organs and nearby areas of the body. These cancers make up roughly two-thirds of all cancers in the United States. In 2009, a survey of 253 men and women treated for colorectal, prostate, bladder, gynecological or breast cancer found that nearly half were having difficulty with sex. Yet treatment-related sexual dysfunction is not isolated to those cancers. Studies have shown that treatments for other cancers can also affect the physical act of sex for cancer patients and survivors, and how they feel about it.
Still, experts who address sexual function emphasize that cancer doesn’t have to mean the end of sex or have a negative impact on relationships. “The issue for me is that for folks who want a sex life or miss it, or feel that it was taken from them, that doesn’t have to be the case,” says Don Dizon, an oncologist and director of women’s cancers at Lifespan Cancer Institute in Providence, Rhode Island.
A Range of Physical Issues
Cancer and treatment can affect survivors’ sex lives in many ways. Some surgeries can have an immediate impact: Young women with ovarian cancer who have their uterus and ovaries removed will begin going through menopause, which can cause vaginal dryness and loss of interest in sex. Men who have pelvic surgery, including removal of the prostate, lower colon or rectum, can have nerve damage that affects their ability to have an erection, either temporarily or permanently. Chemotherapy can cause symptoms of menopause in women and a temporary drop in testosterone in men. Radiation treatments targeting cancer in or near sexual organs can leave scarring that makes sexual intercourse uncomfortable.
Resources for Survivors
The American Cancer Society provides information for overcoming challenges related to fertility and sexuality after a cancer diagnosis.
The National Cancer Institute recommends questions to ask health care providers about sexual side effects of cancer treatments for men and women.
Will2Love, developed by psychologist Leslie Schover, features resources, including self-help programs and courses, for people with chronic illnesses who face sexual challenges.
Sex and Cancer: Intimacy, Romance and Love After Diagnosis and Treatment, by gynecologic oncologist Saketh Guntupalli and endometrial cancer survivor Maryann Karinch, highlights stories of gynecologic cancer survivors. It also includes information about sexual dysfunction and how to address it.
Childhood cancer survivors may experience sexual problems from their treatments when they are adults, says Leslie Schover, a psychologist who has spent more than 35 years working with patients at cancer centers, including the Cleveland Clinic and the University of Texas MD Anderson Cancer Center in Houston. For example, a study of more than 1,600 male childhood cancer survivors published in the Journal of Sexual Medicine in 2016 found that these men had more than twice the risk of erectile dysfunction as survivors’ brothers unaffected by cancer.
Why Not Talk About It?
Despite the prevalence of sexual dysfunction among cancer survivors, conversation about sex and intimacy can be conspicuously absent from patients’ discussions with health care providers. Conversation can be especially difficult between doctors and patients when the latter are lesbian, gay, bisexual or transgender. (See “Cancer Comes Out” in the fall 2016 issue of Cancer Today.)
Research suggests that only about half of cancer survivors report having discussions about sexual issues with their cancer clinicians, says Jennifer Reese, a behavioral scientist at Fox Chase Cancer Center in Philadelphia, who has studied behavioral interventions to improve sexual relations and quality of life for breast cancer survivors. Many health care providers aren’t trained to talk about these issues, she adds. They may also be embarrassed or unaware of treatment options for sexual problems. Survivors may share the embarrassment. “Both clinicians and patients have a lot of barriers to talking about sex,” Reese says. “Each side assumes that if it was important, [the other person] would bring it up.”
When patients do broach the subject, they don’t always get the answers they’re seeking. In 2008, Diane Cameron had just moved in with her partner, Dave, when he was diagnosed with stage IV colon cancer. Cameron, now 64, remembers working up the courage to ask Dave’s oncologist whether it was safe to have sex while her partner was undergoing chemotherapy. The doctor turned toward Dave, who is now Cameron’s husband, shook his hand and walked out of the room. When other providers also didn’t address her concerns about sex, Cameron got angry. “This can’t be OK,” she says. “Doctors should at least be able to say ‘Let me know if you have some questions.’”
Cameron eventually got her answer about sex and chemotherapy from a nurse practitioner who is also a sex therapist: Wait three to five days after chemo or use a condom when having sex. But the writer and nonprofit development director in Albany, New York, says she figured other people must be struggling with sex, too, so she started a blog, Love in the Time of Cancer, to document the couple’s journey. Now Cameron offers workshops on caregiving, and she always talks about sex so that those attending don’t have to be the first ones to bring it up. “I know that people feel shy, embarrassed or like they are the only ones [who are having these issues],” she says. She recommends that if an oncologist is uncomfortable discussing sex, survivors and caregivers should ask to talk with someone else—an oncology nurse, a rehabilitation specialist, a sex therapist or another care provider who is at ease discussing and addressing these kinds of challenges. She also suggests being persistent: “Ask until you get an answer,” Cameron says.
Relating All Over Again
Along with communicating with health care providers, cancer survivors often need to work on communicating with partners. “Sexuality is very complex. It involves what’s going on physically and what’s going on mentally and emotionally, as well as in people’s relationships,” says Reese.
Many of these issues may not be directly related to the physical act of having sex, but they can alter how a person feels about it. Colorectal cancer patients, for instance, may have to wear a temporary or permanent ostomy bag to collect waste. People may wonder how to adjust to that while maintaining a relationship or starting a new one, Reese says. Cancer and its treatment can also affect how desirable a person feels to a partner.
“When you think about the surgeries and the treatments people receive, many of them can affect both sexual functioning and body image,” Reese says, whether patients are adjusting to surgical scars, hair loss or weight changes. Education and support can help. In one study, Reese and her colleagues surveyed colorectal cancer survivors and their partners who participated in a four-session, telephone-based intervention with a trained counselor to educate them about sexuality and how to improve communication skills. Participants reported positive effects on sexual function and greater enjoyment of intimacy compared to those who did not receive this counseling.
To try to understand the toll of sexual dysfunction on relationships, gynecologic oncologist Saketh Guntupalli at the University of Colorado Cancer Center in Aurora and colleagues surveyed more than 300 women of all ages with all stages of gynecologic cancer. The study, published in March 2017 in the International Journal of Gynecological Cancer, found that about 40 percent of sexually active women experienced sexual dysfunction after diagnosis and treatment. Women who had sexual dysfunction were more likely to be in relationship counseling, but their rates of separation or divorce were no higher than those of other cancer survivors in the study.
Maryann Karinch, 65, was already in counseling with her husband around the time she was diagnosed with fast-growing stage I endometrial cancer in 2014. Within weeks of her diagnosis, the literary agent and author from Estes Park, Colorado, had a complete hysterectomy, followed by three rounds of chemotherapy and six rounds of radiation, called brachytherapy, where the radiation source is inserted directly into the vagina. She and her husband had been facing marital challenges, but the diagnosis united the pair into a team focused on Karinch’s treatment and recovery. “Cancer is traumatic, and it brings out your natural predispositions about a lot of things,” she says.
The radiation treatments that Karinch received can lead to scarring that can prevent vaginal intercourse. For some women with extensive scarring, a dilator, a device that opens the vaginal canal, may be recommended, but Karinch’s physician assistant said the couple had the option of having sex four times a week instead of using a dilator. Karinch recalls that she and her husband looked at each other and said, “We’ll have sex.”
Devices and strategies like these can help both women and men address sexual issues. For women who are experiencing vaginal dryness as a result of cancer treatments, lubrication can make sex more comfortable. Pelvic floor physical therapy, hormone therapy and other medications that can relieve the pain of intercourse can help both women and men. Men can use pumps and medications such as Viagra (sildenafil citrate) or Cialis (tadalafil) to increase erectile function. Surgical implants may also help.
Cancer surgeries, such as nerve-sparing radical prostatectomy, have helped preserve urinary and erectile functions in many men, says Arthur Burnett, a urologist at Johns Hopkins University School of Medicine in Baltimore, although he cautions that there is still work to be done to understand and improve erectile function after surgery. He advises his patients to work on their physical health, which includes adopting a healthy diet, not smoking and getting regular exercise, all of which have been shown to improve erectile function.
Techniques to help connect mind and body may also help to increase sexual satisfaction. For example, a study in the Jan. 1, 2018, issue of Cancer that polled 46 ovarian cancer survivors found that a half-day workshop that combined sexual health education, rehabilitation training and cognitive behavioral therapy skills increased self-reported sexual function and reduced anxiety about sex.
In many cases, couples may need to learn new approaches. With regard to sexual intimacy, “you may have to do things you never did before,” says Cameron, whether that means planning ahead to use devices to help with sex or finding alternatives to vaginal intercourse. Ultimately, these efforts can bolster relationships. “Those conversations are intimate, and they can build intimacy—and that can strengthen the partnership,” Cameron says.
This was the case for Ginyard, the prostate cancer survivor in Baltimore. During the time he and his wife couldn’t have intercourse, they developed a new sense of intimacy by talking about the changes he was experiencing and deepening their shared religious faith. The couple spent time walking, holding hands, reading and watching movies at home together. “I could admire my wife without sex being on the table,” he says, adding that that admiration and closeness remained once his sexual function returned after his treatments ended.
Reframing how a person or a couple thinks about sexuality can be the key to finding intimacy and satisfaction after a cancer diagnosis. “The goal of sexual intimacy and intercourse is to enjoy it,” says Dizon, “so sometimes play is more important than performance.”
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