Sex and Cancer -- Breaking the Taboo

June 25, 2013 — -- Shortly after Kristen Howard's wedding in August 2011, a ball began to form in the back of her throat that proved difficult to diagnose.

"Some doctors thought it was a tonsil infection. My primary care physician thought it was post-nasal drip," said Howard, 31. By the time she got the diagnosis of non-Hodgkin lymphoma -- a cancer of the lymph nodes -- the ball had grown so large it impeded her ability to eat, talk and, to some extent, breathe.

Six rounds of chemotherapy over five months followed. "I lost my eyelashes, I lost my eyebrows," said Howard, who runs a longboard skateboard shop with her husband in New York's West Village. "But the hair on my head was the least of my concerns."

Much more troubling were the side effects Howard said her doctors never mentioned: pain during sex and a flatlined libido.

Young cancer survivors can feel impact of disease years later.

"This was something I was totally clueless on," said Howard. "It took me a really long time ... to realize that the sexual side effects I was having had anything to do with chemo. I just sort of assumed it was more psychological, more mental than anything else."

Howard's experience brings home a question many women patients wish their oncologists would ask more often: How's your sex life? The question would at least open a conversation on what cancer patients and experts say is a neglected area: the sexual fallout of chemotherapy and other cancer treatments.

"Oncologists are focused on treating the disease," said Mary Hughes, a clinical nurse specialist in sexuality and cancer at the University of Texas MD Anderson Cancer Center in Houston. "The more pressing issues, like nausea, vomiting, sleeping, pain, those are addressed, but sexuality isn't. And the patient thinks they shouldn't be talking about it because there is some level of shame -- they're thinking about sex when they're trying to live."

Lack of training is another barrier, said Leslie Schover, a clinical psychologist and researcher at MD Anderson, who has studied the sexual problems of cancer patients for 30 years. "I've had a lot of women go to people who were trained in sex therapy but didn't know anything about cancer, and they just didn't get it. Or people who were trained in psycho-oncology but don't know about sex therapy.

"There might be 30 or 40 mental health professionals around the country who know about sex therapy and who know about cancer," Schover continued. "Women expect that their gynecologists are experts in these things, but they aren't. General gynecologists are surgeons and obstetricians and have little training in women's sexual problems."

But with 13.7 million U.S. cancer survivors, a number that's projected to increase to almost 18 million by 2022, the number of women experiencing treatment-related sexual side effects is expected to spiral upward.

"If you look at who the cancer survivors are in the U.S., two-thirds of the women have had breast or pelvic cancer -- cancer sites where treatment typically leaves them with a greater than 50 percent chance of ending up with a nasty, permanent sexual problem," said Schover.

Cancer treatments that save lives can have later consequences.