My partner could barely touch me without crying.
I had flown out to California to spend New Year’s 2016 at his desert cabin. In the photos of us from that trip, we laugh, posed in front of slot machines at a kitschy casino; he plays his guitar next to the cabin’s pot-bellied stove; I beam at him in a restaurant, my hair long.
The photos are not lies, exactly. After all, these moments happened. But what the photos don’t capture: the moments when my partner and I were terrified.
Just a month earlier, I’d been diagnosed with breast cancer. After discovering that the cancer was in two locations in my left breast (plus there were two different types), I decided to have a bilateral mastectomy rather than a lumpectomy with radiation. The surgery was scheduled for January 8 in Chicago.
So, those sunny desert days had the surreal quality of nostalgia even as they were happening; those were our last normal days.
Except that they were in no way normal. My partner and I normally behaved like teenagers who couldn’t keep our hands off each other. During a hotel stay just prior to my diagnosis, he had sucked my left nipple so long and avidly that we’d both fallen asleep that way.
Post-diagnosis in the cabin, we held each other in an asexual fog, listening to Jonathan Richman, Jay Bennett, and the logs burning in the stove. “You’re going to be OK,” he told me. “It doesn’t make any difference to me whether you have breasts.”
It wasn’t that I didn’t believe him. We were both nearly 50, and of course I knew he didn’t love me just for my breasts. And one week later, as he held my hand while I awaited surgery, then rubbed my feet and back as I came out of the anesthesia, I knew I should be grateful for his devotion and to be alive. But I also couldn’t help wondering whether my life as a sexual woman was over.
The lack of support — or even concern — for my sexual health from my medical practitioners was shocking.
I had absolutely no idea where to turn for answers to this question. I was in the middle of being passed around an oncology department with lightning speed — from a painfully shy, mousy breast surgeon to a bow-tie-wearing, middle-aged plastic surgeon to a nurse who coordinated appointments and looked like a Catholic school teacher. No one mentioned sex to me. In fact, none of these professionals asked anything at all about my life.
I’m fortunate to have a smoking-hot friend who’s been through mastectomy and reconstruction, so I texted her. She encouraged me to give my partner time and to try and “direct” how my new bionic body would be perceived within our sexual dyad.
Since neither she nor I was interested in becoming a “broken sister” to our lovers, she suggested I strike a balance between intimacy and honesty and retaining mystery and fire. “We’ve had fantastic, sometimes strange, sex postsurgery,” she wrote, making me confident that my partner’s and my fire would also return.
But what happens, I wondered, to women who don’t have such honest and encouraging friends? What happens to those who want to keep their cancer private? The lack of support — or even concern — for my sexual health from my medical practitioners was shocking.
Even more stunning was that when I tried to think of a female role model in contemporary media who had survived breast cancer while managing to keep her sexuality alive, I could only come up with Samantha on “Sex and the City.” And she never lost her breasts!
Where do women get information, education, and encouragement when their doctors and the media are failing them?
When I told my therapist that I had resumed my sex life less than a week post-surgery, she literally gasped, “What?”
“My [oncology] team didn’t prepare me at all for post-cancer sex,” said Natalie Serber, a New York Times Notable Book author whose memoir “Community Chest” tackles her journey through breast cancer, when I asked about her experiences.
“The topic never came up except for the one question I asked my oncologist regarding sex during chemo: Was it safe? Honestly, he seemed taken aback, like it would never have occurred to him to be sexually active during the three months of chemo.”
Serber’s experience dovetails with my internet search that uncovered thousands of blogs, medical journals, and hospital websites warning to anticipate the “loss of desire” that accompanies breast cancer and its treatments.
“Lack of desire is the most common sexual problem for all cancer patients,” announces U.S. News & World Report in “Information on Sexuality and Cancer.” A 2010 Journal of Sexual Medicine study reports that, two years later, 70 percent of women with a breast cancer diagnosis face issues with sexual functioning.
Researchers found that
Sexual dysfunction occurs more frequently in women who had chemotherapy, or in younger women who were no longer menstruating. “[C]hemotherapy can wreak havoc on a woman’s ability to orgasm,” warns Kelly Connell, a writer on Caring.com. Leslie Schrover, a sexuality and health educator observed that, “Ever since psychological issues became a focus of attention in oncology, breast cancer treatment has been seen as especially traumatic to women’s sexual relationships.”
Might there be a silent majority of women who are less sexually impacted by breast cancer than the medical community, the bloggers, and the researchers anticipate?
Even the free reference books given to cancer patients by the hospital oncology department warn women that their lack of desire is normal and not something about which they should feel guilty!
This is sound advice for those facing a life-threatening illness, but could such medical group-think become a self-fulfilling prophecy? Might women fear and avoid sex because the medical community is telling them that sex will be painful or that they may no longer orgasm? Might women who are already fighting cancer not feel up to a second battle?
For me, it turned out that the worst was over. My partner — though he may not have been aware of it — was so afraid for my safety during the wait for the pathology report that sexual arousal was the furthest thing from his mind.
Six days after my mastectomy, we met with my oncologist and were delighted to hear that the cancer was gone and my lymph nodes were clear. My partner and I scurried back to my house and, with my children at school, had giddy, passionate sex. It didn’t matter to either of us that there were four fluid-collecting drains hanging from holes in my body or that my chest was a flat mass of wounds and stitches.
When I told my therapist that I had resumed my sex life less than a week postsurgery, she literally gasped, “What?”
Her shock, of course, made sense. Media and advertising focus on breasts and “youthful” health so exclusively that many women find it hard to feel feminine or sexy post-surgery.
Dylan Landis, author of “Rainey Royal,” described to me how for several weeks after her lumpectomy, she “covered our mirrored bathroom wall with newspaper, so I could shower without seeing my newly deformed self.”
Landis said her reconstructive surgeon offered no advice about how to handle her fears of undressing in front of her own husband. “[My husband] would have loved my breasts if they were purple,” Landis said. “My problem was less sexuality than self-image, which of course one brings to bed. That’s vague stuff for a surgeon, whether the patient is 28 or 80.”
Friends who knew I was still so sexually active were stunned and made it clear I was behaving outside of the norm for what was expected for a breastless, bald, nonmenstruating woman pushing 50.
After my first cycle of chemotherapy, I went into premature menopause. Through all four cycles, however — through the attendant hair loss and nausea, mouth sores and body aches, and thinning of the vaginal walls which makes intercourse painful — my partner and I treasured, and relied on, our sexual connection.
Lubrication helped, but the real truth was that sex was a life force for me in those months, with the emotional payoffs feeling like a bigger plus than the physical impediments. Friends who knew I was still so sexually active were, like my therapist, stunned and made it clear I was behaving outside of the norm for what was expected for a breastless, bald, nonmenstruating woman pushing 50.
But was I really an outlier? Might there be a silent majority of women who are less sexually impacted by breast cancer than the medical community, the bloggers, and the researchers anticipate? Might they fear speaking up because it feels “unseemly” for a woman 40 or older to talk about things like desire, lubrication, or orgasm?
Could it be that older women — or anyone labeled “sick” — keep quiet about sex because society refuses to sexualize anyone deemed less than perfect? Where does cultural conditioning end and physiology begin?
A friend, who I’ll call “Cate,” has been coupled to a woman for over 40 years and so, I imagined, might be immune to fears that she would seem “less feminine” to her wife after surgery. I was wrong.
“I hated my right breast after the lumpectomy,” Cate told me. “Hated that it looked disfigured on the right side where the surgeon took the tumor out, hated how green and swollen it was, hated that it was smaller than my left breast,” she says.
“Before the surgery I was concerned that my wife wouldn’t like the way it looked afterwards because she loves my breasts. It never mattered to her if I gained weight because it meant that my boobs got bigger and she loves that. But my worry about that was unfounded because she really doesn’t care; she’s just glad I’m alive.”
Cate also said that for “nearly a year after the surgery, my breast hurt to be touched or pressed on, so we had to navigate around that. And my right side was tight and sore from the axillary dissection, so there was a lot of trying new positions. A lot of crying and also laughing went along with that. During chemo, I had no desire at all. I was so sick all the time and felt undesirable with my bald head.”
I’d often assumed that my libido stayed strong throughout my cancer treatments because my relationship was new — I was diagnosed with things still fresh and steamy. But conversations with other women convince me that it’s the strength of a relationship rather than its duration that matters.
When deep intimacy is present, desire returns despite physical or emotional challenges. Landis and her unconditionally loving husband, for example, “began an epic collection of silk negligees. Nine years later, I still wear one to bed every night. I can drop the left strap, exposing the ‘good’ breast… or peel the negligee off when the lights are out,” she reports. “It gives me control, and it looks and feels sexy — no flannel for me, baby.”
Cate credits her partner’s patience and acceptance with helping her sexual desire to resurface. “I value so much that my wife and I have such a history together… that nothing was going to make her run away or leave me. I’ve often wondered what it must be like to go through this as a single person… and how that would affect feeling sexy and desirable. The thing that helped me the most was knowing how deeply [my wife] loves and wants me.”
I had not considered the sexual plight of single women with breast cancer until I Googled it. Luckily, sites from Match.com to CURE are crammed with articles about women’s post-cancer experiences, both positive and negative, offering advice about everything from getting comfortable being naked again to the best moment to reveal one’s medical history to a lover.
In Dating After Breast Cancer, comedian Lisa Kate David explores how a double mastectomy liberated her from the tyranny of body worship. “I used to beat myself up and try to hide every imperfection about my body,” she writes. “But the fact that I have scars and no nipples is impossible to hide. There’s something so liberating about everything being out in the open. It’s like any ideal of perfection I could have ever hoped for went out the window with my breasts. Everybody has scars, mine are just more visible.”
Not surprisingly, though, article after article focuses on body image, self-esteem, and “breaking” the surprise of surgically altered breasts to men; the focus is woman as object. All ignore issues of the breast-owner’s sexual desire or fulfillment.
Of course, single women facing cancer deal with additional challenges that go way beyond worries about libido. Survivor Deidra Bennett writes on Refinery 29: “I once sat in on a breast cancer support group only to leave feeling more burdened and more fearful — and to be honest, jealous and angry, too. ‘I do it for my husband and my kids,’ one woman said tearfully. ‘I couldn’t do it without them’… [t]hese women already had their partners and their kids; they had a reason to go on. I wasn’t sure I’d ever get the opportunity to even meet someone one day.”
Research published in the Journal of Psychology and Health reveals that both single women and single mothers are at higher risk for depression after cancer than women who’re coupled. They’re forced to worry about how to run a household with kids while sick and how to deal with loneliness.
To women newly diagnosed with breast cancer who face fear and uncertainty, I offer this: Female sexuality appears to be as diverse as every other aspect of contemporary womanhood. There’s no one-size-fits-all description of what to expect. If your doctor, your partner, your friends aren’t talking frankly, keep searching and asking.
Sexuality is a constantly evolving part of us that doesn’t wither with age or illness. Every woman I spoke to defied the statistics and regained a sexual life and orgasm.
Breaking the silence around midlife female sexuality, around the sexual desires of those who don’t conform to physical stereotypes, may help you view your sexuality as a positive life force, especially after cancer.
As Lisa Kate David states: “I felt sexier and more comfortable in my body than I had ever been… After getting my double mastectomy, I found new respect for myself and my body.” Indeed, most women indicate that their sexual lives are richer and deeper now than prior to illness.
Walking through fire with your partner and still being totally desired, having someone caress or kiss your scarred breasts not because they look perfect but because they belong to you, now that’s what’s truly sexy.
This article originally appeared on CoveyClub, a virtual meeting place for lifelong learners.
Gina Frangello’s most recent novel, “Every Kind of Wanting,” was released on Counterpoint in September 2016. Her last novel, “A Life in Men” (Algonquin 2014), was selected for the Target Emerging Authors series, has been optioned by Universal Cable Productions/Denver & Delilah, and was a book club selection for NYLON magazine, The Rumpus, and The Nervous Breakdown. She’s also the author of two other books of fiction: “Slut Lullabies” (Emergency Press 2010), which was a Foreword Magazine Best Book of the Year finalist, and “My Sister’s Continent” (Chiasmus 2006). She has nearly 20 years of experience as an editor, having founded both the independent press Other Voices Books, and the fiction section of the popular online literary community The Nervous Breakdown. She has also served as the Sunday editor for The Rumpus, the executive editor for Other Voices magazine, and the faculty editor for TriQuarterly Online. Her short fiction, essays, book reviews, and journalism have been published in such venues as Salon, Dame, Ploughshares, the Boston Globe, BuzzFeed, the Chicago Tribune, the Huffington Post, Fence, FiveChapters, Prairie Schooner, the Chicago Reader, and in many other magazines and anthologies.