Editor's note: This story contains sexual content that may be objectionable to some readers.
Many women lose their libido or feel unable to talk about sexual dysfunction following cancer treatment. But as Sunnybrook's SHARE clinic shows, it doesn't have to be that way
Pat Abbey laughs as she describes the difficulty of finding sexy lingerie when you have a permanent hole in your abdomen, just left of your belly button.
Pat, a dentist who lives in York region, was diagnosed two years ago, at age 52, with rectal cancer that was encroaching on her vagina. After the diagnosis, life became a blur for the busy mother of three sons, age 24, 20 and 18. A whirlwind of treatments left her with a colostomy bag and an altered anatomy "down there."
But Pat tackles her problems with openness and humour. She describes her colostomy as "like having a small change purse, or a baggy, attached to your stomach." This surgery allows Pat to maintain her usual diet and activity levels, like going to the gym and skiing. She also tells the story of her middle son's reaction to her frankness while she was recovering from surgery. He was 19 at the time and recuperating from a leg injury, so they were "sharing the couch," Pat says. He must have heard her once too often talking about her condition. One day he blurted out, "Mom, I'm sick of hearing about your vagina!"
Pat is candid when describing a nagging worry that emerged once treatments were over and she and her family shifted back into a semblance of normality: Would she still be able to have sex? "I was concerned about whether my vagina was functional. I didn't want to rip anything. And I had zero libido." Luckily for her, Sunnybrook is one of the few places in Canada with a dedicated clinic to help women like her regain their sexual function and sexuality.
The SHARE clinic (Sexual Health and Rehabilitation) is a biweekly clinic at the Odette Cancer Centre that was founded by Dr. Lisa Barbera, a radiation oncologist in the gynecology department, and Dr. Jennifer Blake, chief of obstetrics and gynecology. The clinic has grown gradually since 2007 and now sees about 50 patients a year. At first, it was available to women with gynecological cancers; it is now accepting women with pelvic malignant cancers, such as gastrointestinal and colorectal, as well as those who have breast cancer at a young age.
"Women's sexuality is seen as a secondary issue in most cancer clinics," Dr. Barbera says. "For men going through prostate cancer, the subject of sex is very much up front. For women, the only way it comes up is in reviewing consent for treatment, which might mention the impact on the ability to have intercourse. I don't think that's okay." The SHARE clinic is a safe place for women to discuss sex. The first appointment is with a specially trained nurse and a follow-up appointment is with Dr. Blake. Dr. Barbera's role is as executive director. Social workers, psychologists, marriage counselors and sexologists are also available.
"We spend a lot of time educating women about their anatomy, physiology and sexual response," Dr. Barbera says. "We get comments back that patients feel like they are being treated like a whole person. They are grateful to have a place to discuss issues and what is happening with their body."
On Pat's first visit to the SHARE clinic, she sat down with nurse Lauran Adams. "It was nice to talk to someone who really understands. It's like having a friend or knowledgeable older sister, and it's totally non-threatening. They normalize that this has happened to you. Their attitude is, 'Of course you'll want to be sexually active, and we'll help you get there.'" Lauran showed Pat a large, zebra-print-wrapped box of dialators and explained how they could help her sexual function. Other solutions for Pat included estrogen cream, lubrication and hormones that improve libido. "They do a wonderful job," says Pat, who is happy to be sexually active again.
This personal touch was a relief after Pat's arduous treatments: chemotherapy concurrent with radiation, then surgery to remove the bottom portion of her large intestine and the back of her vagina, then more chemotherapy. But for Pat, hardship won't stand in the way of a good laugh, just as it won't preclude having sex. "With a colostomy you have no control over passing gas," she laughs. "Having boys, this of course was a great source of merriment! You've probably heard of a 'cheek flapper.' Well when I was particularly noisy, they would say it was a 'bag flapper'. It is hard to get too serious about that."
Dr. Fay Sliwin, Cathy Doyle and Kathy Moore, a patient.
Then there's Kathy Moore, 52, a science teacher in Uxbridge, who welcomed the opportunity to speak frankly with a nurse about her sexuality. Twenty years ago, she was diagnosed with ovarian cancer and had her uterus and ovaries removed. She and her husband adopted a little girl, now 21. Because she had ovarian cancer at such a young age, Kathy is considered to be at high risk for breast cancer and gets checked regularly at Sunnybrook.
During one of these appointments, she mentioned to a caregiver that her hot flashes were unbearable when her GP had recommended she stop taking hormone replacement therapy after she'd been on it 20 years. (Studies have linked HRT to a higher risk of breast cancer in some women). The Sunnybrook caregiver referred her to the SHARE clinic. Once there, it was a great relief to finally sit down and talk to someone about menopause, sexuality and how she felt about her body.
"I've never had anyone to talk to about it because I went through it so long ago. My friends were all getting pregnant and I felt like I'd been neutered. You start to feel that you are not very feminine. After losing both ovaries and uterus, you feel something less than female. I knew what was gone, and I needed to learn how to better use what was left," Kathy says. "It was nice to sit down with another female and talk about all this. It was like having a glass of wine with a friend. We talked and laughed. It was an 'anything goes' conversation."
Staff at the SHARE clinic assured her that it was fine to go back on HRT, and they prescribed other hormones as well. "When going through induced menopause, I was not exposed to the same levels of hormones as my body would have been making naturally, so the studies and controversies did not apply to me," she says.
Kathy was encouraged by the SHARE clinic to make sex a priority. She has learned not to be ashamed of what happened to her, and has even mustered enough courage to go to a sex shop to research dilators and lubricants.
Sex is a topic, she says, that women often feel they can't discuss with specialist doctors or their GPs. "I don't want to discuss sex with an attractive young male doctor. And during follow-up visits at hospitals, quite often the doctor is not alone. So we're not about to say, 'something weird is happening down there.'
"It was so nice to find women at the SHARE clinic. We have our own set of issues that can't be dealt with using broad brush strokes," she says.
Dr. Barbera is proud of the SHARE clinic and laments that there are not enough similar resources in Canada. Regional Cancer Care Northwest in Thunder Bay has a clinic modelled after Sunnybrook's. "There are pockets of expertise around the country, but these resources are few and far between," she says.