"I actually liked my body before. And then I got diagnosed with breast cancer."
Ann Marie Otis of Syracuse, NY, was 40 when she learned she had cancer in June of 2012. She'd have a double mastectomy in July of that year, and six months later, a hysterectomy.
What she still remembers is the whirlwind of poking and prodding she received from a rotating group of doctors—being felt up as she got a second opinion from a practitioner she didn't know, taking off her shirt so a plastic surgeon could snap before and after photos of her breasts, visiting with an oncologist, and then an endocrinologist, and a neurologist. Taking her shirt off each time, having her breasts assessed during every visit. Watching herself being reconstructed, surgery after surgery.
It changed the way she related to her body. And in some ways, it turned her into an observer rather than a participant in her own sex life. "My breasts weren't something private and intimate between me and my husband anymore," Otis reflects. "I just became a science experiment. I felt like they weren't mine … they just became these obstinate little flat pieces that had—physically and mentally—no feeling to them. I didn't care about them anymore."
The story is similar for Jenn*, who was 37 and in the beginning of a budding new relationship when she received a breast cancer diagnosis. "It was like I had closed up down there," she says. "It was just not happening." She had no desire, she says. Besides, having sex hurt. Like, a lot.
Jenn remembers watching survivors on TV shows donning wigs and dancing out of the shop, their confidence restored, their lives returning to normal. It wasn't a narrative that reflected the experience she had during the four months she spent in chemo. "I gotta tell you, wigs are a total pain in the butt—especially the nice wigs," she says. "The last thing I wanted to do was have sex and mess up my $300 wig that I wear on a daily basis."
Experiences like Otis's and Jenn's aren't uncommon—in fact, they're exceedingly common. "Unfortunately, the majority of people who are diagnosed with cancer report some change in sexual function, because of either cancer or cancer treatment," says Sharon Bober, founder and director of the Sexual Health Program for Cancer Patients and Survivors at the Dana-Farber Cancer Institute. Bober explains that treatment's impact on sexuality and sexual function is broad; the side effects are myriad.
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There are physical, biological differences: urinary incontinence, impotence. Some drugs cause nerve damage that contributes to loss of sensation in sensitive tissues, including the breasts, or erectile dysfunction, or problems with ejaculation.
A number of treatments lead to premature ovarian failure or suppresses ovarian function and will therefore impact your sex life. Certain prescriptions—Tamoxifen, for example, an estrogen blocker that reduces risk of recurrence—not only cause physical symptoms like weight gain and hot flashes, but also impact libido and desire. Radiation, chemotherapy, and hormone therapy can all cause early onset menopause, leading to sexual problems ranging from loss of vaginal moisture to decreases in sexual desire. Jenn says chemo made her prone to infections, including yeast infections, and contributed to soreness and chafing. ("I just felt gross all the time," she says.)
And while early onset menopause isn't always permanent, the emotional impact of treatment can linger long after chemo or radiation is over. "When my period came back after about six months, things started to get back to normal—just in time to start coping with all the other crap that messed with my sexuality, body image being by far the biggest and most destructive," says Emily*, who was diagnosed with cancer at 28. "I felt completely unprepared to deal with it."
Because there mental and emotional changes, too, in the experience surrounding arousal and desire, or in feelings of femininity or masculinity. "All those side effects impact well-being, and certainly can decrease desire for sex," says Leslie Schover, a clinical psychologist whose expertise is in developing practical treatments to prevent or overcome sexual problems associated with cancer treatment. "And sometimes, if you go through a long dry spell without having a sex life, it's difficult to get back to normal afterwards." Schover, a pioneer in the field of cancer and sexuality research, notes that weight gain or loss can cause feelings of self-conscious, as can chronic fatigue, which can last for months after chemo is over, and nausea.
Since sexual changes are a pretty standard part of cancer treatment, it seems like addressing them should be a pretty standard part of treatment too, right? But that's far from the case. Jenn, who's active today in various online communities, says that even in a closed forum with fellow survivors, people are still hesitant to bring it up (although she adds that whenever they do, the posts get hundreds of comments).
And if patients aren't bringing it up, you can bet that their doctors aren't, either. Emily thinks that's probably because many cancer specialists aren't comfortable discussing sex—let alone sexuality—or simply don't have the expertise. And Schover, herself a cancer survivor, agrees.
"Healthcare professionals are under tremendous pressure in oncology settings," she explains. "They have to guide people through very complex regimens: What is your diagnosis? What are your treatment options? What are the side effects?" Since some studies put the average oncology visit at less than 23 minutes, sex and fertility often fall off the radar screen. "It's a rare patient who's brave enough, in the midst of a very busy cancer clinic, to go, 'Oh, by the way, doc, I'm having problems with my sex life.'"
Schover says another problem is a lack of interdisciplinary education. Urologists and gynocologists don't often know about cancer side effects; oncologists and oncology nurses have minimal training in sexual issues. Mental health professionals specialize in working with cancer patients or those seeking sex therapy—rarely both.
When Jenn brought her issues up with her oncologist, she says her doc didn't didn't really offer very much—just a promise that it would get better. And when she asked post-chemo OBGYN if he'd ever had a patient her age on Tamoxifen, he admitted he hadn't. She realized, disheartened, that there was no way he could help her; she was telling him more about the medication than she was getting back.
According to Bober, research shows that men are more likely to hear about potential sexual side effects than women. That could be due to the advent of medication like Viagra, Cialis, and Levitra—clinicians might think it's easier to ask about it, because "curing" the problem is as easy as prescribing a little blue pill.
Of course, these are complex problems. Viagra doesn't help with desire, and in fact, most ED treatments don't always work for all but minor ED symptoms. "And when they don't, men think there's something wrong with them, like, 'Why am I not tangoing down the street like the guy in the Viagra commercial?'" Schover says. In these cases, other treatments—penis pumps, localized medicine—can be extremely effective. But they require time, and patience, from prescribers, partners, and patients.
So what do we do about this? Chemo is hard enough as it is, and it doesn't seem fair that people have to sacrifice their sex lives along with it. Bober says that thankfully, there are lots of options that are extremely effective.
"A lot of times, people only need a little bit of help. I don't think everybody needs intensive sex therapy and counseling and psychological care," Bober says. "Sometimes, people really just need a little bit of information … you might have more resources than you realize available, you just need to know where to look."
She also says there are more resources for patients now than ever, and she's excited to see more programs like the one she oversees at Dana-Farber popping up in hospitals across the country, although those tend to be isolated in along the coasts or in major metropolitan areas with big cancer centers.
There are reliable online resources too. Back in the '80s (we told you she was a pioneer), Schover helped the American Cancer Society put together two self-help booklets—one for women and one for men—about sex and cancer. They've been regularly updated since. And Schover's latest endeavor is Will 2 Love, a brand-new online sex and fertility startup for cancer patients and survivors with webinars and forums that can help. Bober points to relatively new professional organizations like the Scientific Network on Female Sexual Health and Cancer, an interdisciplinary group of researchers and clinicians working and advocating in this field.
Schover is also behind Bring it Up!, a campaign meant to encourage conversations about sex and fertility in cancer care. And Bober says it's important not to be embarrassed or uncomfortable addressing sexuality with your doctor. "I strongly support and encourage patients to advocate for themselves—as they do for so many other things," she says. "When patients are facing pain, nausea, or discomfort, we want patients to make some noise and get the help they need. I strongly believe that getting help for cancer-related sexual problems is no different."
Eventually, Jenn tracked down a gynecologist who had worked with other patients on Tamoxifen (which she recommends doing). Today, she's a huge proponent of lube and sex toys—two things she never used before her diagnosis but regularly works in now. "But that was something—I had to research that," she says.
"It shouldn't become work," adds Otis, who says she and fellow survivors often end up taking it upon themselves to reclaim their sex lives. Schover says that as a result of the responsibility falling to the patient, only about ten percent of those who are having sexual problems bring it up themselves. She'd like to see some sort of referral network at cancer centers around the country that could connect patients with experts in the field.
Bober agrees, adding that we need to overhaul the way we think about sexuality in cancer patients. Inquiries into sexuality and sexual function should be standard in general oncology and survivorship care, she says, a component of the basic review of systems that gets as much attention as other quality of life issues like cardiac function and fatigue. If patients got education on the front end about side effects (loss of elasticity, dryness), along with information about ways to combat them (dilators, vaginal moisturizers) she thinks patients would be less likely to give up or see sexual issues as something they just had to endure, an experience part and parcel to their diagnosis.
It might not be an easy fix. Otis and her husband have to talk through it. It requires patience; there will be frustration. "I have a different view of my body, and I have a different view of my body naked," she says. "It's a lot of self-love. You have to learn to love what you're left with."
Jenn knows people who are five years out from treatment and don't want to be naked in front of their partners. While that hasn't been a problem for her, she notes that she isn't the same person she was before her diagnosis, and her sex life isn't the same, either. Still, "It can get better," she says. "I still have good sex; I'm still intimate with my partner."
Bober wants patients to live long, healthy lives. But she also wants patients to live happy, fulfilled lives, asking simply: "If you're going to lose your quality of life, what's the point?"
*Sources prefer to use only their first names.
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