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.
"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.
Chemotherapy, radiation, endocrine therapy for certain types of breast cancer can wreak havoc on the systems that underlie pleasurable sex, and sometimes leave women infertile. Vaginal dryness and tightness, resulting in pain during sex, loss of libido and a decreased ability to reach orgasm are the most common sexual symptoms. Decreased estrogen production in the ovaries, or their surgical removal, can push women into abrupt menopause, or exacerbate menopausal symptoms. Pelvic radiation therapy can narrow and shorten the vagina, decrease its elasticity and disrupt blood flow, all of which can impede sexual response and derail one's sexual self-image.
Even though Howard's new husband told her "1,000 times a day how much he likes bald women," she said, "the dryness was a major issue" for her.
"Throw in the nausea, fatigue, constipation, hot flashes, weight, gain, especially around the face and neck, and some extremely dark undereye circles, and I'd say I was feeling pretty unsexy.
"I was a newlywed, and to feel like my body was letting me down and failing me at the moment when I needed it to do something was really frustrating."
Dr. Shari Goldfarb, a medical oncologist at Memorial Sloan-Kettering Cancer Center in New York who treats breast cancer patients, developed an interest in these treatment-induced sexual side effects about six years ago while still a fellow at the center.
"I started talking to patients who were saying, 'Oh, I'm so glad you're asking about this. This is such an issue. What can we do about it?' I realized there was much interest in this area from patients, but that clinicians didn't necessarily address it or talk about it, because people didn't know what to do."
Goldfarb and her colleagues undertook two surveys, one of breast cancer patients and one of lymphoma patients, and found that more than three-quarters of the women reported sexual dysfunction.
"They felt their sexual dysfunction was from the anxiety of being diagnosed, or from a change in their relationship with their partner, but surgery, chemo, endocrine therapy also played a role, and were sort of the biggest culprits," she said.
With funding from the Susan G. Komen and Gabrielle's Angel Foundation, which also funded the initial surveys, she's now following 300 breast cancer and lymphoma patients between the ages of 18 and 50 for five years to gauge the impact of chemotherapy and other cancer treatments on sexual functioning and fertility.
"We'll determine baseline sexual function before any treatment, and then the predictors of sexual dysfunction, the best time to intervene and what the best interventions are," said Goldfarb. "We also want to learn more about who is able to have children after their treatment."
Bringing up sex and cancer together, though, can be sticky, especially for women. "For men, it's always how is this going to affect my sexual function. These have been taboo subjects for women, and they don't bring it up as much," said Goldfarb. "But most patients will say, 'I want to discuss it, but I feel awkward discussing it.'"
Surveys published in the British Journal Cancer and the Journal of Psychosocial Oncology found that less one-third of women brought up sexual problems stemming from their cancer treatment with their doctors.
"No matter what your age, it's a difficult topic," said Suleika Jaouad, who was diagnosed with acute myeloid leukemia in May 2011 at the age of 22, and has been chronicling her disease in the "Life, Interrupted" column of The New York Times. She said she almost couldn't bring herself to write a sex and cancer column.
"People are so uncomfortable talking about sex. It's embarrassing. It's awkward," said Jaouad, who has undergone a bone marrow transplant and is on what she hopes is her last round of chemotherapy.
"When I started noticing changes in my body, starting with my infertility and later menopause, I was incredibly embarrassed. I was having all the symptoms -- hot flashes, pain during intercourse. I didn't understand why that was happening, and I didn't know who to talk about it with. Part of me wondered if it would be inappropriate or off-topic to bring it up with my oncologists, so I didn't."
And neither did they, she said.
Instead, like Howard, Jaouad turned to other women with cancer for answers, and Google, where she learned that her cancer treatments would likely leave her infertile.
"When I found out about the infertility late at night by myself on the Internet, I just freaked out," she said. "I didn't know if I had time to do egg preservation treatment or what that entailed. And it caused so much emotional stress that I feel was so unnecessary." Although Jaouad said her oncologists were receptive once she brought it up, "the idea that I had to initiate the conversation myself, and that it wasn't standard protocol to discuss those things made me wonder."
Some headway has been made. Although "it's still a big area of need," said Goldfarb, women's sexual and reproductive health has begun to work its way into cancer protocol, especially at cancer centers in big cities, albeit slowly.
Memorial Sloan-Kettering now asks about vaginal dryness, pain during intercourse and decreased libido on the questionnaire patients fill out before visits, Goldfarb said, and three years ago it opened the Female Sexual Medicine and Women's Health Programthat brings together psychologists, sex therapists, gynecologists and nurse practitioners to take on the problem.
Similar multidisciplinary programs now exist at MD Anderson and the Dana-Farber Cancer Institute in Boston. The Breast Cancer Survivorship Program at Johns Hopkins and the Program in Integrative Sexual Medicine at the University of Chicago are other examples.
Schover at MD Anderson just completed a trial for an online interactive self-help program for women with all different types of cancer that can also be used as a training tool for medical providers. "It's everything I know in a website," said Schover, who hopes to eventually distribute it commercially.
"Although it's still a work in progress, I do think we are doing a much better job now in discussing sexual health with our patients," said Goldfarb. "And sometimes it's just preparing somebody at the beginning and saying, this treatment might make you infertile. It may cause premature menopause. It may cause sexual dysfunction. When you normalize it, they realize maybe many women are going through this. It makes it easier to talk about."