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 Health Medicine and Women's Health Program that 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."