What came between Jessie and her boyfriend of seven years was nipples. Or rather, the lack thereof.
Jessie (a pseudonym -- while she wouldn’t mind using her real name, her ex would be mortified, she says) is a 31-year-old schoolteacher from New York who underwent a preventive bilateral mastectomy two years ago. For her, the decision was simple.
She had six maternal relatives who’d had breast cancer, prior to menopause in all but one case. Her own mother had been diagnosed at 26 and was dead by age 30. When Jessie herself tested positive for BRCA1 (a gene mutation that raised her chance of developing breast cancer to 60 percent, as opposed to 12.5 percent for women in the general population) her immediate response was, Why wait to get sick?
Then she looked at her partner’s face and saw panic. So she put the procedure off … for a while.
Finally, though, she decided she couldn’t live with the odds any longer. She scheduled the mastectomy, along with plastic surgery to get implants. After discussing it with her doctor, Jessie opted against saving her nipples -- an option some women choose even though it carries a small risk.
In a so-called nipple-sparing procedure, surgeons would have carved out the breast tissue under and around while leaving the nipple and areola of each attached. Because nerves would be cut during the surgery, there’s little chance of actual nipple sensation. And in some cases, diminished blood supply causes the nipple to shrivel and become deformed over time. Of greater concern to Jessie and her surgeon: There’s a small chance that breast cancer lurks or will grow in the nipple itself.
“My attitude was, if I’m going to do this, I’m going to do it right,” she says.
But her boyfriend disagreed. He was angry and felt she hadn’t taken his feelings into account. He grew increasingly uncomfortable and remote throughout the procedure: double mastectomy, reconstruction of the breasts using cadaver tissue, and a messy, gory aftermath involving lymphatic drains.
At the time, Jessie was entirely focused on her own body and its recovery. She didn’t want to die. And how, exactly, was she supposed to negotiate this decision with her lover when no expert she consulted ever mentioned sex?
Looking back, she says she wishes she had handled it differently. Her boyfriend really tried. He stayed. He helped her to the bathroom and brought her Vicodin at 4 a.m.
“If I could talk to women, I’d tell them do not let your man drain you,” Jessie says, referring to the process of emptying and measuring the bloody lymphatic fluid siphoned off by her surgical drains. “That whole area is just a mess. I think my partner couldn’t deal with the act of being a caregiver. And a lot is written about the women’s side of it, but I don’t think men get due credit for what it does to him.”
Jessie’s new breasts, for instance. They looked great under clothing, but artificial -- smooth but for scars running like lightning along the surface of the skin -- and her partner didn’t want to touch them. Or her.
The couple tried counseling, but Jessie’s boyfriend was reluctant to share his true feelings. He admitted that he felt guilty, yet he couldn’t help being totally turned off. For her part, Jessie was just as capable of orgasm and inclined to be as sexual as before. And she’d developed new hot spots to make up for the ones that were gone: Her cleavage and the region under her collarbone suddenly had become erogenous. She asked her boyfriend to kiss her there when they made love. But he couldn’t do it. There was something too disturbing about her nipple-less breasts.
“I will never forget turning around in the kitchen one night,” says Jessie. “I was doing dishes and I slammed them down and was crying and said, ‘Honey, these things may be plastic, but the rest of me is not. I need you to start touching me again.’”
A few months later, they broke up.
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The chance that a man will be diagnosed with prostate cancer in his lifetime is 17 percent -- roughly 4.5 percent greater than a woman's risk of getting breast cancer. One could argue that there is inequality in the way society treats the sexes when it comes to cancer: Do we celebrate prostate cancer awareness month? Stage walks for prostate cancer research? Wear purple ribbons?
No, although that may have much to do with other statistics as well: The survival rate with early detection and good quality treatment is nearly 100 percent for prostate cancer, while the cumulative rate for breast cancer is about 90 percent. According to the National Cancer Institute, the average death from breast cancer occurs at 68, while the median age for death from prostate cancer is 80. All of which means that an increasing number of young women, even famous ones, are opting for genetic testing and preventive mastectomies. (Anyone wanting to learn more about preventive surgeries should go to the Bright Pink website.)
And in terms of medical strategies to cope with the sexual aftereffects of cancer treatment, men are literally decades ahead of women. Surgeons long ago developed nerve-sparing procedures and radioactive seed therapies to reduce the risk of impotence. For men who do have difficulty getting erect after undergoing prostatectomies, doctors respond with therapies, drugs, mechanical devices and support groups.
For women, virtually none of this exists.
“It’s sexism, ageism, paternalism,” says Dr. Michael Krychman, medical director of the Southern California Center for Sexual Health and Survivorship. “Sexual health is the No. 1 quality-of-health complaint women have after breast cancer treatment. Men are studs -- we’ll talk to them about sex. But we still have the attitude that a woman who survives should forget about all that and be grateful she’s still alive.”
I've seen this imbalance play out among people I know.
About a year ago, I had lunch with a much older male colleague whom I’d always thought to be genteel and discreet. After we ordered, he confided that he’d recently been treated for prostate cancer. I said I was sorry. Our salads arrived. And he began to talk.
For the next hour, I heard about penis pumps and Viagra. He told me his urologist had given him orders to masturbate at least once a day — twice, if possible. Then he described how odd it was to have an orgasm without ejaculation. Excising the prostate eliminated semen, he explained. But he was learning that even without the thick spray he was used to, coming could still feel good.
Later, the man phoned me to apologize. He’d been terribly inappropriate, he said. But I had to understand: From the moment his cancer was diagnosed, healthcare professionals had been talking to him nonstop about sex.
A few weeks later my friend Becky was diagnosed with a hormone-receptive breast tumor. She was in her late 40s -- an outspoken woman working in a male-dominated field. The oncologist told Becky she’d need a sizable lumpectomy, chemotherapy, radiation and treatment with Tamoxifen, a combination that often triggers immediate menopause in women over 40.
"Could any of this affect you sexually?" I asked, flashing back to the conversation with my 70-year-old colleague. "Will you lose sensation? Will your libido drop as a result of the drugs?"
Becky had no idea. No one had talked to her about any of this. The one time she’d asked a sexual question of her surgeon -- about whether she could leave intact the nerve endings leading to her nipple -- the woman shrugged, telling Becky she would do what was necessary to eliminate the cancer. Period.
“We find there is a real difference in the way physicians treat the genders,” confirms Dr. Dixie Mills, medical director for the Dr. Susan Love Research Foundation, one of the nation’s leading nonprofit organizations devoted to the study of breast cancer and women’s health. “Maybe it goes back to unconscious, ingrained stereotypes. A lot of male doctors won’t talk to their mothers about sexuality, but they’ll talk to their fathers. So they’ll talk to their male patients but not their female patients. Yet we’ve found even some women doctors aren’t comfortable talking to their female patients about sex.”
This is particularly true, it seems, when the topic is nipples. Virtually none of the literature or education around the topic of breast cancer covers the sudden disappearance of erotic sensation in the breast. There is no attempt, as there is in a prostatectomy, to preserve the nerves. Modern mastectomy simply hacks off the offending tissue and creates a blank area where there once was tingling current.
“It’s a really huge loss sexually, and also in ways you don’t anticipate,” says Meg, a 35-year-old Ohio woman who, like Jessie, underwent a preventive double mastectomy. “For instance, I have no warning when I’m going to get my period. I used to know exactly because my breasts would get sore. For the first couple months after the surgery, I’d be just floored every month.”
Even less-invasive lumpectomies often damage the nerves so nipple stimulation is no longer helpful in achieving orgasm. My friend Becky, who had her surgery in early January, now reports her left breast and armpit are entirely "dead."
“This happens mostly when the incision is near the nipple,” Mills says. “But rather than talking about this with their patients or cutting into a different area, surgeons just go ahead and consider it necessary. Everyone is so focused on getting the cancer out that sexual issues fall to the bottom.”
One organization is trying to correct that. The Young Survival Coalition, a New York-based nonprofit that supports women under 40 who have been diagnosed with breast cancer, runs seminars and support groups whose focus is on relationships and sexuality. And the offerings have become so popular that older women are asking to join the organization.
”We have sex therapists and counselors who can help them deal with things like vaginal dryness -- which occurs in most women after chemotherapy,” says Stacy Lewis, vice-president of programming for the Young Survival Coalition. “For a lot of women, we find it’s simply pain that’s preventing them from having sex.”
In fact, both chemotherapy and many of the drugs used to treat hormone-receptive breast tumors can cause the abrupt onset of menopausal symptoms: hot flashes, mood swings, loss of libido, and vaginal dryness, which leads to painful intercourse. But women at risk for reproductive cancers -- particularly young women -- cannot use many of the fixes available to the general population, such as HRT (hormone replacement therapy) or topical hormone creams.
There is a non-hormonal drug for female sexual dysfunction in Stage 3 FDA clinical trials. But it could be years before it’s brought to market; at this point, there is no effective Viagra-style therapy for women. Nor have any of the dozen or so women I interviewed been advised by their doctors to masturbate in order to increase blood flow to the area -- though it makes sense it might help. Only KY seems to be sensing the growing need for solutions, with its ever-expanding line of female-targeted lubricants.
The only real medical advances for women have been made in the area of cosmetic surgery -- making the areas look more normal and functional even if they’re completely numb. Still, design options are far from perfect.
The fake nipples offered to Jessie were perpetually hard and looked terrible under clothing. “I couldn’t see putting a pair of Tic-Tacs on top of these perfectly formed new breasts,” she says.
Despite a modicum of risk, Meg elected to have areola-sparing surgery -- meaning the dark, round circles from around her own nipples were retained and reapplied -- because her plastic surgeon said it would create a “visual cue.” Breasts without nipples or areolae are like faces without eyebrows. They disconcert, making viewers subconsciously uncomfortable.
A sexual partner -- even a devoted husband -- might respond negatively on a visceral level, without really understanding why.
In a voluntary study of 300 women, conducted by the Young Survival Coalition, 49 percent said their breast cancer experience reinforced or strengthened an existing romantic relationship.
Happily, this was the outcome for Meg, whose marriage thrived as she recovered from surgery. Her husband attended every one of her doctor appointments, met her as she came out of the operating room, and had dozens of flowers waiting for her upon her return home. In the year since her surgery, Meg found she prefers to wear lacy camisoles during sex, but this is because her breasts no long feel erotic to her. It is not because she feels the need to hide them from her partner.
“My husband was there for me across the board,” she says. “He was 100 percent loving and accommodating and has never indicated any dissatisfaction with my body. I am keenly aware of how fortunate I am in terms of the person I’m with. The story of having a guy who just can’t deal is not atypical. I know so many women who’ve had that experience, and my heart goes out to them.”
But of those breast cancer patients who’ve remained married or coupled, Mills says anecdotal evidence collected by the Dr. Susan Love Research Foundation indicates many of them are simply living without satisfying -- or any -- sex.
“We hear a lot of women say it just isn’t important to them anymore,” says Mills. “But we hear other women say their marriage is suffering, or they’re in a bad relationship but terrified of separating from their current partner because that means they’ll have to get out there and date.”
And what about those women who happen to be single already? In addition to the physical changes -- the lack of nerve endings and nipples, the vaginal dryness, the low libido -- there’s the sometimes crippling issue of body image. Men are notoriously visual creatures. Jessie is acutely aware of this.
“It's really hard to seek out new partners because, to me at least, there's a certain spontaneity lost in the heat of the moment,” she says. “I mean, you're making out and all of the sudden you have to say, ‘Oh, by the way, don't want to surprise you, but I don't have any nipples.’ Talk about a mood killer! You just cross your fingers and pray you have a nice moment at dinner when the topic gets brought up so you can 'warn him' ahead of time.”
She pauses, then goes on. “But if you don’t, there’s this black cloud following you around while you're talking about music, food and politics … When will I tell him? And how will he react?”
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