Cancer and Sex: Why Is Nobody Talking About It?

July 20, 2017

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.

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 million American 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.

“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.”

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