Rebuilding a life of intimacy isn't easy
Sunnybrook clinic helps deal with the side effects of treatment
Cindy cries once a week.
She misses her old self, the 27-year-old with a flat stomach and smooth skin who didn't shy away from an intimate relationship. The woman who thought she would have children one day.
Seven years ago, a doctor confirmed what Cindy, now 34, had been thinking: She had cervical cancer.
Months of chemotherapy and radiation followed. Eventually she was told the cancer was gone and she could return to her normal life, her government job, her daily 10-kilometre runs.
It wasn't that easy.
When she was first diagnosed, she concentrated on getting well.
"I was in the fight of my life," she said. But no one could prepare her for the battle she'd fight after her cancer treatment.
"The side effects of treatment were worse than the cancer," said Cindy, who asked to remain anonymous.
She was going through menopause, had chronic pelvic pain from the radiation treatments and she also had vaginal dryness. Being intimate was unimaginable. Cindy's body did not look or feel the same, including the skin on her stomach, which was left lumpy, rippled and scarred.
"I didn't feel like a woman for a very long time," she said, tears in her eyes. Cindy didn't feel comfortable talking to anyone about such personal issues. Doctors never asked how she adjusted to "life after cancer."
Cindy was not alone. Few resources exist for gynecological cancer patients with emotional and physical issues relating to the loss of fertility, body image, sexuality and the sudden onset of menopause.
Each year 3,000 women in Ontario are diagnosed with a gynecological cancer, and many of them are young. Cervical cancer is the second most common cancer in women between the ages of 22 and 44.
But a program now in its second year, known as the SHARE (sexual health and rehabilitation) clinic, is providing relief for women like Cindy. The clinic at Sunnybrook Hospital's Odette Cancer Centre is the only one of its kind in Canada
Twice a month it provides a forum for women to speak one on one with oncologists and nurses who offer counselling, information and ideas to relieve the side effects.
It was the brainchild of Dr. Lisa Barbera, a radiation oncologist who couldn't find a place to refer her patients dealing with these issues.
The issue of sexuality in cancer patients has been overlooked, and "not given enough attention in gynecologic cancers," Barbera said. "Often the focus is on the cancer and some of these issues get back-burnered."
For Cindy, who said nothing of her symptoms for six years, recently finding the clinic was "better than winning the lottery."
"My quality of life had diminished. They saved my life," she said. "For the first time in years I have hope. I feel good about the future. I don't feel alone."
Christine also found hope through the SHARE clinic. The 52-year-old Durham Region wife and mother said she spent years asking doctors how to relieve the discomfort she felt during intercourse.
Diagnosed with uterine cancer last December, Christine has already beat cancer once. In 2001, she was diagnosed with colon cancer. The uterine cancer was detected during a routine ultrasound as part of a colon cancer follow-up.
When she was diagnosed with uterine cancer, she thought the pain was related to that, but the discomfort was likely the result of her earlier cancer treatments.
"Everybody told me the same thing. Use lubricant. But that wasn't helping," Christine said.
The frustration was emotionally draining.
"I shouldn't have to suffer," she said. "I kept thinking there must be something I can do."
At the SHARE clinic Christine was prescribed vaginal progesterone tablets to help her body produce more lubrication.
"I wish I had found a clinic like this three years ago," she said. "Finally I have found some relief...It has taken a load off."
The clinic has helped about 50 patients.
"There are many, many more who want to come. We have a waiting list," said Dr. Jenny Blake, an oncologist and head of the program.
The response to the program has been positive.
"It has been phenomenal...Of all the things I've done in 30 years, none felt like I was making such an impact," Blake said.
With wait times for surgery and treatment already too long, Blake said oncologists often don't have time to talk with patients about emotional and sexual issues. She also said there's a general lack of training in medicine in sexual health.
"Now we can be the place that they can raise those issues," she said, adding the clinic is attracting interest from other cancer centres.
Oncology nurse Cathy Doyle said some patients are embarrassed and need someone to talk to about the changes to their bodies.
She provides education and counselling and teaches patients kegel and pelvic floor exercises to help build strength in the area to make sex less painful.
"Often the patient hasn't been intimate in some time and if it doesn't go well, they aren't motivated to keep trying," she said, adding she reassures women their difficulties are normal.
For Cindy, the clinic has given her hope.
"I want to be a mother. I am putting a plan in place. I have a good job. I bought a house. I hope to adopt a child. I have a lot of love to give," she said. "I'm not going to let a disease stop me."