CANCER AND SEX: WHY IS NOBODY TALKING ABOUT IT?

Wearing only stretchy blue briefs, David Fuehrer posed for the camera with one beefy arm flexed over his head, the other clenched in front of his chest. T hick muscles and veins rippled under his tan, hairless skin, and there was a tense smirk on his face. It was 2001, and Fuehrer, then 25, was just a few days away from winning the light heavyweight title at the Natural New York State Bodybuilding Championship.

Four months later, he was diagnosed with testicular cancer. “It stripped away all of my male identity,” says Fuehrer, now 40, whose treatment left him impotent for nearly a year. “Impotency to a guy is so much more than your thing doesn’t function. It’s like, you’re not a man. How do you say to people, ‘I’m not a man’?”

When people first hear those three words—“You have cancer”—they’re thrust into an alternate reality where the only thing that’s certain is just how uncertain their future is. How long will I live? If I die, what will happen to my children and loved ones? How painful will treatment be? Will I lose my hair? Get fat? Need a double mastectomy? Will I be able to have kids? There are so many important and charged topics for patients to discuss with their doctors that sexuality is often pretty low on the list of concerns.

It shouldn’t be.

“The cure isn’t enough,” says Fuehrer, a former research consultant at Pfizer and GE who now sits on the board of directors for Stupid Cancer, a nonprofit focusing on young adult cancer. “Just the fact that more people are living, that’s wonderful, but more people are living with really awful stuff they now have to deal with.”

Cancer is a ruthless, nefarious disease, and oncologists are vigilant about shrinking cancers and preventing their spread. In other words, extending life. But these treatments often bring with them a horror show of sexual side effects, from impotence to vaginal shrinkage and dryness. There are also the emotional ramifications patients, their partners and families endure. At least 60 percent of cancer survivors suffer from long-term sexual problems, and fewer than 20 percent get the help they need to lead fulfilling sex lives, says Leslie Schover, a clinical psychologist who’s one of the pioneers in helping cancer survivors navigate sexual health and fertility. Only half of all cancer patients recall anyone from oncology addressing the effects that treatment will have on sex and intimacy, and just 20 percent report being satisfied with the help they received from health care professionals for their sexual problems.

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A lot of that is due to plain old embarrassment—sex is one of the most universally uncomfortable topics of discussion. “A lot of folks think it will get better over time, and it doesn’t, or years go by, and they’ve lost intimacy in their life,” says Catherine Alfano, vice president of survivorship at the American Cancer Society and a rehabilitation psychologist. “Sexuality is a very understudied area for the same reason it’s an undiscussed area in clinical practice: People just don’t want to talk about it—not in their research, not as a patient, not as a provider.”

But for the more than 15.5 million Americans alive today with a history of cancer—and for those among the 1,688,780 new cases of cancer that will be diagnosed this year—surviving the disease does not have to mean a life devoid of physical pleasure and intimacy. There are therapies and medications available to every patient, along with a small cadre of experts who help survivors navigate the jagged path back to sexual health—if only patients and doctors would learn how to talk about it. “The point of being alive is to enjoy life and connect with the ones you love,” says Dr. Madeleine Castellanos, a psychiatrist who specializes in sex therapy and works with cancer patients. “So if you’re not enjoying your time, and your quality of life is shot, what’s the point?”

Not Even Dust Comes Out

Cancer is the second-leading cause of death in the United States, claiming over half a millionAmerican lives each year. But a cancer diagnosis is not necessarily a death sentence, and improved treatments and earlier detection mean that more people today are surviving than ever before. The five-year survival rate of leukemia, for example, has increased from 34 percent in the mid-1970s to 63 percent from 2006 to 2012, according to the American Cancer Society. For breast cancer, survival rates during those same periods jumped from 75 percent to 91 percent. But once you survive cancer, what comes next?

The answer to that depends on everything from your type of cancer and treatment to your age and gender. Most prostate cancer patients, for example, experience erectile dysfunction at some point, whether they undergo surgery, radiation or hormonal therapy. They also lose the ability to ejaculate (though they can still orgasm), and sometimes they express some urine during ejaculation. Some men have weakened sensation at orgasm. Others experience discomfort, though rarely pain. After surgery, most men have temporary incontinence, and after hormonal therapy, most experience a decrease or loss of sexual desire. The most devastating part of all this is when patients and their partners aren’t fully prepared for these side effects. “This week in my practice, I had a 50-year-old guy with tears in his eyes. He said, ‘If I’d known it would be like this, I wouldn’t have done it,’” says Dr. John Mulhall, director of the Male Sexual and Reproductive Medicine Program at Memorial Sloan Kettering in New York City. “The problem is, patients are not given realistic expectations…. Eighteen months after surgery, your erections could be great, but every time you ejaculate, you’ll leak an ounce of urine.”

Harry, a 63-year-old hairstylist, struggled to regain sexual functioning after his prostatectomy at Mount Sinai Beth Israel in New York City. “They tell you within a week or so of having the catheter taken out that you should masturbate. Initially, you’re frightened. They’ve cut everything inside of you, and nothing comes out—not even dust!” he says. Masturbating increases blood flow to the penis, which helps decrease the risk of impotence, as well as shrinkage. But Harry hated it. “You are so flaccid that it’s even a pain in the ass to do.”

After treatment for prostate cancer, most men take Viagra and Cialis to provide blood flow to avoid penile shortening and help with erections , but many need additional interventions, like penile injections, vacuum pumps and alprostadil urethral suppositories (brand name: MUSE), which are small pellets inserted into the tip of the penis. “It sounds awful, but it’s really not that bad, and people get into a rhythm,” Mulhall says. Pills and injections didn’t work for Harry, but MUSE did. “No pain, and five minutes later, boom! Erect! It’s like a miracle, but if you’re on a basic salary, it’s a lot of money,” says Harry, who was treated at Mount Sinai in New York City. He pays $120 for each suppository. “I make more money than the average person. If someone gives me a couple hundred dollars in tips, I think, Oh! I’ve got two erections!”

A 72-year-old prostate cancer survivor and former cancer researcher from a major pharmaceutical firm, who spoke on the condition of anonymity, says he never regained his erectile function. “You just learn to live with it,” he says. “I got a couple of daughters. Life is good. I’m living in a comfortable retirement. I travel. You gotta look at the positive things. You can’t mope around.”

That attitude is hard for many to adopt, especially younger men. When Fuehrer was diagnosed with testicular cancer at 25, he had an orchiectomy to remove one of his testicles. He recovered and got married at 28, but two years later, he was diagnosed with a different form of testicular cancer and needed another orchiectomy, followed by radiation and hormone therapies. His doctors didn’t prepare him for the consequences: He’d be left feeling exhausted, in pain, nauseous and infertile. He spent nine months completely impotent. Within a year, his wife left him.

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“I don’t blame her. It was just more than she could handle,” says Fuehrer. “Despite how awful all of that was from a cancer experience, the hardest part was spending the next five years not feeling like anybody understood what that was like. I lived—yay! I reached the five-year [survival] mark, but I spent those five years in quiet loneliness…. Will I ever date again? Will I feel like I did before I went through this? If not, what will it be like? Those are heavy things to face when all of your friends are having babies, getting promotions and buying BMWs.”

Like a Murder Scene

Tamika Felder knew what cancer patients looked like: old, sickly, bald, drugged up. At least that’s what her father looked like as he died of cancer when she was in high school. But at 25, she went from being a freelance broadcaster in Washington, D.C., to a cancer patient at Johns Hopkins Hospital in Baltimore, where she underwent chemotherapy, radiation and a radical hysterectomy to treat cervical cancer. “The loss of my fertility—you don’t feel like a woman. You don’t feel like anybody will ever want you…. And being 25, I was like, ‘I’m gonna have to give up sex for the rest of my life!’” says Felder. “I wanted to know, Is this it for me?”

Women who undergo chemotherapy often end up in temporary or permanent early menopause, which can lead to vaginal dryness, tightness and painful sex. Chemo can also decrease libido, cause yeast infections, inflame genital herpes or warts, and lead to fatigue, nausea, weight gain and hair loss. “You look in the mirror, and you don’t feel pretty—and you really don’t look pretty,” says Hester Hill Schnipper, program manager of oncology social work at the Beth Israel Deaconess Cancer Center in Boston and a two-time breast cancer survivor. “I facilitate a lot of support groups, and lack of libido is the big thing that will get talked about. It can be funny in a painful way: What would you rather do on Sunday afternoon than have sex? Scrub the kitchen floor, clean the closets, get a root canal. Basically anything.”

Felder’s cancer treatment left her with “bad radiation burns from front to back,” she says. “There’s something symbolic about the mom who used to put the diaper rash cream on the baby and is now doing it again with burn cream for her 25-year-old.” Felder, who’s now 42, also has vaginal atrophy, shrinkage and dryness, and a thick scar from her bellybutton to her vaginal lips. “At first, it was painful just touching it because of the surgeries and treatment. It’s like, there’s no way I’m ever sticking anything in there! Then you start healing, and the body remembers, and you’re like, ‘Oh, what’s that? Oh!’”

After punishing treatments, sex isn’t universally important to everyone. Schnipper works with a young woman who’s planning to have a bilateral mastectomy with reconstruction. “The sexual responsiveness of her breasts will be gone,” Schnipper says. “She keeps telling me that that part is a matter of complete indifference to her. She says, ‘I don’t even like it when my husband touches them.’ Most people feel more of a loss.” Schnipper mentions another patient, a woman in her early 70s, whose top concern when it came to taking hormonal estrogen treatment was losing her libido.

Sex always mattered to Felder. “I survived cancer—I deserve at least a good orgasm!” After she recovered from her surgery and treatment, she spent nearly two years going on casual dates before she met someone she felt comfortable enough to have sex with. That didn’t go so well. “It was like a murder scene. There was so much blood,” she says. “I remember running into the bathroom and calling my friend. I was like, ‘He tried to break my vagina!’ You think, I’m never going to experience the joy of sex; it’s just not gonna happen. It does, but you have to be gentle with yourself, physically and emotionally.”

In 2011, Felder reconnected with an ex-boyfriend, and they got married two years later. They live in Upper Marlboro, Maryland, where she runs Cervivor, a nonprofit that educates patients and survivors of cervical cancer. “It’s awkward already just being naked in front of someone. We’re in a real body-conscious society, where looks matter,” she says. “Add scars and missing limbs or dents in limbs or body parts, and that’s an extra burden. Doctors have a responsibility to make sex a part of the quality of life beyond cancer.”

No one informed Erin Wagner that treating her anal cancer would mean she’d never be able to have sex with her husband again. She was diagnosed in 2008, at 49, and six weeks after radiation and chemotherapy, her doctor cleared her for sexual activity. But when she and her husband tried to have sex, she felt “severe, urgent pain,” she says. “I had to convince my husband to try because there was just nothing arousing about the pain he was causing me.”Everything hurt her—oral sex, touching, vibrators, even using lubrication.

Wagner tried minor surgery to remove scar tissue inside her vaginal canal and started physical therapy. “I’d use a nerve-numbing cream, then I’d use a dilator for 15 minutes for stretching, and then I’d put the larger dilator inside of me and spend five to 10 minutes moving it a little,” she says. “But it’s really difficult to get it inside, to the point where I’d cause myself to rip. It’s that kind of pain where you have to remind yourself to breathe.”

But nothing worked. Last year, she and her husband separated. And last month, she stopped trying to make her vaginal opening large enough for sex. “The tough thing is, I could control my motivation, but I couldn’t control how disappointing and frustrating it was for my husband. He was very silent. It was just a connection we no longer had. We spent a lot of years trying to figure it out but feeling very disconnected from each other.”

These days, Wagner, who lives in Iowa City, works as a patient advocate and coach for people dealing with cancer and consults with providers, teaching them how to address sexuality with their patients. A couple of months ago, she and her husband started dating again. “We went through a long journey: How much of our relationship is emotional, and how much is it physical, and how much has to be physical?” she says. “We’re spending a lot of time together to determine if what we have with each other is enough.”

The Best-Laid Plans

Whether you’re married, in a relationship or single, there is no magic fix for jump-starting your sex life after you’ve survived cancer. Practical tools, like vaginal lubrication and dilators, can help women target tight muscles around the entrance of the vagina, and medications address erectile dysfunction, but those work only when coupled with emotional support, open communication and, in many cases, therapy. “A lot of patients just stop touching completely during these periods of illness,” Schover says. “One partner becomes the caregiver of another, taking care of surgical drains or helping with the stoma bag that holds urine or stool.” Her goal is to help couples start seeing each other as lovers again. “The couples that get into trouble, you can pretty much always see there was something wrong to begin with. If a couple had lousy communication and trouble showing caring—if the wife is in radiation, and the husband goes off on a fishing trip—that makes for a lot of resentment.”

Concerns about sex vary from person to person, treatment to treatment. A cancer survivor may be too exhausted to have sex and thus worry that his or her partner is missing out. Or they want to have sex but physically can’t. Others struggle with body image issues and no longer feel feminine or manly. Partners, too, face unique challenges: Some feel guilty asking for sex, or they can be so worried that they’ll hurt their partner during sex that they lose their desire. When one partner starts shutting down physically, the intimacy degrades. “This is a terrible, sad story, especially because we have a lot of treatments that can help!” says Alfano. “Patients can get back to having a wonderful sex life; it just might have to work differently.”

One of the first steps is accepting that sex probably won’t be like it used to be. “The majority of people talk about penile-vaginal intercourse. For the record, there’s so much more on the menu!” says Castellanos. “Sexuality is anything that helps get us sexually aroused, both physically and psychologically.”

Schnipper urges patients to focus on feeling intimate in ways that are not physically or emotionally painful, like showering together, trading foot massages or holding hands while watching television. “When I teach exercises to regain sexuality and intimacy, we start by saying intercourse is off the table for this week. Instead, spend half an hour touching each other in other ways—and stay away from genitals,” she says. Instead, Schnipper suggests couples use oils, silk, feathers or anything else that reminds them that their bodies can still feel pleasure. She also urges women to masturbate. “You have to relearn what works for your body, and it may well be different. You have to learn it before you share it with your partner.”

When you’re single and recovering from cancer treatment, dating is rife with dread at every age. A woman in her 60s meets a man she likes and tells him she survived breast cancer; he bails because his first wife died of breast cancer. Or a man in his 60s who had prostate cancer has to explain to a woman that he can’t have erections. Meanwhile, young people worry if they’ll ever meet someone who accepts and loves them just as they are.

“If your vagina doesn’t work because you had cervical cancer—if you can’t fuck a guy or a girl—that’s terrible when you’re 26. When you’re 75, fine. But not when you’re impotent and all you want to do is date,” says Matthew Zachary, founder and CEO of Stupid Cancer. “What’s your Coffee Meets Bagel profile for, ‘I’ll never be a mom’?” Zachary was diagnosed with terminal brain cancer at 21, given six months to live, and then, as he puts it, “I wound up not dying.” His treatment left him bald, underweight, infertile and temporarily impotent. Seven or eight years later, he finally started dating again. “I went on a date with a girl and told her I had beaten cancer, and she started crying hysterically in a diner and embarrassed me. Note to self: Don’t do that!”

The first time Felder went on a date, she blurted out that she had cancer and can’t have children. “There was never another phone call,” she says. “It was word-vomit: My hoo-ha is pretty f-ed up! But you learn as you go.” Both she and Zachary are now married.

Schover and Schnipper counsel patients not to talk about their cancer experiences on the first or second date, but not to wait too long either. “If you find yourself thinking this relationship has legs, and maybe I’ll end up in bed with this man, you need to tell him before you get there,” Schnipper says.

Fuehrer, the two-time testicular cancer survivor, spent three years chasing women after he regained his sexual functioning. “My mentality was to prove I was still a man,” he says. Then he met his second wife. “On our first date, she asked me, ‘So you’re not married?’ I’m like, ‘Well, OK, I’ll just say it: I’m a cancer survivor. I was married, and I’m not now.’ I laid it out.” He was convinced he’d never hear from her again, but they texted later that night and have been together ever since.

There is intimacy after cancer, but it’s predicated on one assumption: Oncologists and patients talking about the ways cancer affects sexuality and interventions that can help. A couple of years ago, Alfano attended a meeting on sexual health and chronic illnesses organized by the American Sexual Health Association. “As a psychologist, I was the only health care provider sitting around the table who had clinical training in sexual health. There were 50 people at the table!” she says. “That’s how little training health care providers—nurses, physicians, anybody—get in sexuality…. Patients don’t like to talk about this with their health care providers, and health care providers, especially oncologists, are not trained how to ask about it. Sex is an issue that goes unmentioned.”

Every expert interviewed by Newsweek for this article agreed. “It’s really important for patients to open up to their doctors and bring this rather uncomfortable conversation forward,” says Schnipper’s husband, Lowell Schnipper, the Theodore and Evelyn Berenson distinguished professor of medicine in the field of oncology at Harvard Medical School, as well as the clinical director of the cancer center at the Beth Israel Deaconess Medical Center. “I’m sure it exposes their vulnerabilities in ways that only compounds a cancer diagnosis, but patients need to be empowered to approach their doctors—and expect that they’ll give them an empathetic hearing and respond appropriately.”

Getting to Yes, Yes, Yes!!!

Schover just might have the solution. After 13 years as a staff psychologist at the Cleveland Clinic Foundation and nearly two decades at the University of Texas MD Anderson Cancer Center, she retired last year and founded Will2Love, a digital health company that offers evidence-based online help for cancer-related sex and fertility problems. “My goal was to create something online that’s available to anyone at a relatively low cost,” she says. “Insurers may cover some of the physical procedures [cancer survivors need on their journey back to sexual health], but they cover very little in the way of sexual counseling. A lot of private insurers exclude couples therapy or using sexual dysfunction diagnoses from the kind of mental health coverage, and if we lose [the Affordable Care Act], we’ll lose whatever coverage we had.”

Will2Love offers basic educational materials for free, as well as monthly subscriptions to research-based self-help programs that Schover developed with funding from the National Cancer Institute. (One month costs $40, three months $114, six months $216.) The programs cover everything from painful sex and orgasm problems to treatments and dating after cancer, and they’re geared toward patients, health care professionals and parents of young adult or teenage children with cancer. Last month, she launched the “Bring It Up!” public awareness campaign to encourage patients and health care professionals to address questions about sex, fertility and cancer.

As Mulhall puts it, “If sex is really important in your life, you should declare that! You think your surgeon will tell you everything you think you need to hear. They’ll only tell you everything they think you need to hear.”

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