Nine years ago, Maria,* 46, of Thunder Bay, Ont., developed breast cancer‘one of the thousands of women diagnosed annually (last year, 23,300 women were diagnosed in Canada alone). Within a year and ‘a half, she had undergone a lumpectomy, chemotherapy, a double mastectomy and a complete hysterectomy.
After surviving the disease and hoping for a return to a normal life, sex was definitely on the agenda for Maria, just ‘as it is for many breast cancer survivors. While treatments like surgery, chemotherapy, radiation and drugs can kill self-esteem, libido and the enjoyment of sex, it can’t erase one thing: the memory of how good sex is and of the intimacy it creates with a partner. However, regaining that kind of intimacy after breast cancer can be a daunting challenge for some women.
According to a Journal of Sexual Medicine study published last fall, 70 percent of women diagnosed with breast cancer face sexual function problems two years after diagnosis. The report’s lead author, Mary Panjari of Australia’s Monash University, says that 83 percent of the women in the study (1,011 breast cancer survivors under the age of 70, who had partners) considered their sex life good and satisfying before breast cancer, but noticed a real decline after they underwent treatment.
Gina Maisano, a two-time breast cancer survivor and the author of Intimacy After Breast Cancer, says it’s not the kind of issue many doctors address. ‘They think, ‘We’ve saved your life and we’re done; you should be happy.’ But you want your life back, and you didn’t fight this hard to live half a life. You want everything, and that includes sex.’
Long Island, N.Y.-based Maisano says one of the difficulties can be that once you are ready to resume your sex life, your partner may need help to switch gears. If he was your caregiver when you were sick, now he has to morph back into being your lover. But by changing your bond from that of needing him to wanting him, you can build an even better relationship. ‘If you tell him that you want him, he’ll start to feel like a sexual being again. You’re telling him that that part of your lives isn’t over. You can start a beautiful new relationship with someone you’ve been with for years.’
Reviving your feelings of passion for each other
Maria is wistful when she speaks about her intimate life before breast cancer struck. Happily married since 2000 to an energetic man who loves hunting and fishing, the mother of two was diagnosed at the age of 37. After her double mastectomy, she discovered through genetic testing that she carried the BRCA1 gene, which means her risk of breast, ovarian and other cancers is greatly increased. So Maria made the decision to undergo a complete hysterectomy. In addition to the drastic changes to her body, her sex life changed dramatically. Until her hysterectomy, she’d had her libido. After the surgery, her sexual desire dropped off sharply. Her libido all but disappeared and she stopped enjoying making love to her husband as much as she once had. The couple used to have sex once a week, but after Maria had her breast-cancer treatment, that dropped off to once every three months.
She tries to make light of her situation, but there’s a melancholy that’s difficult to ignore. ‘I joked that technically I was a woman, but I felt different. Without estrogen coursing through me, I didn’t feel passion, and I missed it.’
After her mastectomy Maria had breast reconstruction, but she lost nipple sensation, something she’d previously enjoyed. Maisano says it’s still possible ‘to have some sensation in the breast area. ‘After surgery, the sensations that you felt lower ‘in your breast before are now higher. If you trace around your areola you probably won’t feel anything, but if you go higher, up to your neck, the feeling intensifies. It’s almost as if the nerves are compensating for the lack of sensation in the nipple area.’
While Maria has moments of passion, it has been difficult motivating herself to make love. She says she’s lucky her husband has been very understanding. ‘I’ve told him this is me now, this is what we have to work with and I can’t control it.’
While Maisano was writing her book, ‘she spoke to a number of women who have lost their sex drive. ‘The desire is lower but it’s not gone,’ she says. ‘The biggest sex organ we have is our brain. You have to get into the right frame of mind, and this is where your partner can help you. Be more romantic, have more foreplay, and your desire will increase.’
Maria and her husband have tried sex toys and lubricants with limited success. She plans to contact a doctor who was recommended to her and who specializes in helping women enter back into a sex life after going through breast cancer. Because of Maria’s reduced libido, frequency is also ‘an issue. She says, ‘We made a pact two months ago to have sex every week. We’ve had it twice since then. Still, that’s good; the year before we might have done it once every six months.’
Coping strategies for side effects of treatments
Laura,* 33, from Saskatoon, was engaged to be married when she was diagnosed with breast cancer at age 28. She underwent chemotherapy, had a single mastectomy of her left breast and radiation, as well as breast reconstruction two years later. When she was prescribed endocrine drugs, she went through menopause, which caused vaginal dryness. And taking antidepressants (her doctor diagnosed her as suffering from depression after her breast cancer treatment) killed her sex drive. Laura had her last orgasm before she was diagnosed with cancer.
Many women find that certain treatments send them hurtling into early menopause, which causes huge intimacy issues, Panjari explains. ‘Chemotherapy and radiotherapy can cause pre- or perimenopausal women to become menopausal. After the initial treatment, women who are estrogen receptor positive are placed on endocrine therapies like tamoxifen for as long as five years. These drugs block estrogen and cause women to become menopausal and experience vaginal dryness, night sweats and the inability to sleep, which in turn affects sexual function.’
Maureen McGrath, a registered nurse in Vancouver who specializes in female sexual health, explains, ‘What causes the vaginal dryness, as well as itching, burning and/or soreness and light bleeding after sex, is a condition called vaginal atrophy. It can narrow the vaginal opening or cause the vaginal walls to become thin, fragile and inflamed, which can make intercourse painful and decrease pleasure.’
McGrath suggests using a combination of three treatments’a vaginal dilator to slowly expand the opening, low-dose estrogen therapy and a vaginal moisturizer. She says Vagifem 10 mcg, a new vaginal estrogen tablet, is a low enough dose to be safe and effective, but women still need to speak with their doctors about whether they can use it.
Laura and her now-husband have only been engaging in oral sex since she underwent treatment. But they are hoping that once she is able to stop taking Lupron injections to reduce estrogen production, their sex life will start to include intercourse so they can start a family.
Laura says she’s the one who initiates sex. Her husband has told her he is always interested, so he’s letting her call the shots. To help get things going again, she’s seeing a psychiatrist who specializes in sexual issues, and has stopped taking antidepressants. As well, she and her husband are experimenting with sexual exercises known as sensate focus. ‘It starts with each of you touching each other everywhere but on the genitals, and moves from there to touching genitalia in a non-sexual way, and then to what you would call heavy petting. It ends up with the woman being on top with genitals touching her partner, then penetration and intercourse. It’s totally led by the female.’
Slowly, she says, things are beginning to happen. ‘In the past few months, we’ve been lying in bed or waiting to fall asleep and all of a sudden somebody touches somebody and we get all hot and heavy.’
Learn to love the new you
For Anna,* 55, from B.C.’s Shuswap valley in the Okanagan, the trauma of losing a breast after her cancer diagnosis was so profound she wouldn’t let her husband see her naked body for three years after her surgery‘even after breast reconstruction. ‘When we made love, it had to be pitch dark. He never saw my scars or my bald head, just me with my lip gloss, my frills and my high heels on. I wanted him to have the image of who I used to be.‘ Until then, she and her husband of 33 years had been used to a great sex life.
Despite her qualms about her body, Anna says that sex was still deeply important to her. ‘Sometimes I didn’t have an orgasm but I needed to get close to my husband.
While a change in a woman’s appearance usually has little effect on her partner’s feelings toward her, losing a breast or breasts can be monumental to a woman’s self-esteem. That was the situation in Anna’s case. Panjari says, ‘In our study, we asked women if they thought their partner felt differently about their appearance and the majority said, ‘No different.’ But the women felt differently about themselves.’
Maisano jokingly advises getting to know the ‘new girls’ if you’ve had breast reconstruction. ‘There’s a disconnect between your new breasts and your body. You feel like you bought them and stuck them on. ‘If you take the focus off your reconstructed breasts and start taking care of your entire body, you start to accept them as a part of you, and gain more confidence. You start to look’and feel’pretty darn good. You begin to appreciate all of you.’
You also need to realize that men will have a difficult time knowing how to react when they see your new body. Says Maisano: ‘If you’re worried about how he’s going to react, he’s going to pick up on it; he’s afraid of what his facial expression is going to look like. Talk about it first. Don’t make your breasts the centre of the sexual experience because they’re not. Sex is a whole-body experience.’
Anna finally showed herself naked to her husband. ‘He was completely accepting. ‘I realized then that it was never about him. It was about me. I was never so free as I was that night.’
Still, she knew her sex life needed work. When she spoke to a doctor one day about her lack of sex drive, she received a wake-up call. ‘She told me that declining intimacy in my marriage might last forever. That’s when I decided’No, not me.’
She headed to a sex store, purchased a vibrator and started reading up on how to improve her sex life. She also started using ‘a vaginal moisturizer every other day”it helps get things moving down there.’
It was an effort, but Anna says it has paid off. ‘It’s not like it used to be, but I do have orgasms and we’re all over each other. It’s wonderful. I’ve conquered this. My message to other women in this situation is: Never give up.’
*Names have been changed