The news about breast cancer keeps getting better. Since 1986, the death rate from breast cancer in Canada has fallen by more than 30 per cent. Women diagnosed with the disease have an 87-per-cent likelihood of living for five years after their diagnosis. Of the 22,700 women diagnosed with breast cancer this year in Canada, about two-thirds will live through it.
This column is dedicated to the other third. One was my friend Sandy. She was diagnosed in her mid-30s, but lived long enough to raise her kids. The cancer came back in her 50s. This time it killed her. Like many other women with breast cancer, Sandy ate carefully, got lots of exercise, and had no risk factors.
During the season when we're all riding, running and walking for the cure, people with metastatic breast cancer – cancer that has migrated to other parts of the body – don't get much mention. Our focus is on “conquering” the disease. All this sunny optimism can make women like Sandy feel like failures. They feel as if they've done something wrong, let people down.
“My least favourite word is ‘survivor,'” says Ginny Yule. Ms. Yule is executive director of Willow, a national breast cancer agency that offers advice and support to women with the illness. She herself was diagnosed 10 years ago. “It makes me feel that I'd have failed if I hadn't lived.”
Willow's Linda Kurjanczyk, who co-ordinates peer support programs, doesn't find the word “cure” very helpful either. Nor is she crazy about all those battle clichés. “When you're diagnosed with metastatic breast cancer, it gets a little difficult.” she says. “Now you're not a warrior any more. You're a prisoner of war.”
“For women with metastatic cancer, hope changes,” says Ms. Yule. “Your focus changes. Now you hope you'll live long enough to see your child get married, or finish the quilt you've started, or watch the tulips bloom again.”
Instead of the term “survivor,” they talk about “living with” breast cancer – with emphasis on the “living.”
Anyone who's had to navigate the cancer maze knows that it is baffling at best, frustrating and frightening at worst. Willow was founded by June Callwood and other women who realized that women with breast cancer need emotional and life support as much as they need medical support. They need a trusted, knowledgeable friend who can also help guide them. Willow's mostly volunteer team of counsellors have all been through the maze themselves. They know the questions: Why me? What can I do? They can explain the difference between hematologists, radiologists, oncologists and surgeons. They can describe the side effects of drugs or chemo, and put women in touch with others who've gone through it. They can answer questions about hormone therapy, breast reconstruction, aromatase inhibitors. They can advise women who are self-employed and on their own, and whose chemo is making them sick. They can suggest how to get help for depression. They know about the different drug plans in different provinces, and clinical trials, and why some treatments are available in the U.S. but not here. They have information available in Farsi, Bengali and other languages. They help women to become their own best advocates, and reassure them that their disease is not their fault.
Ms. Kurjanczyk often talks with women who've been newly diagnosed with metastatic cancer. For them, the questions are different. Will they die now? Is there anything that can be done? How long can they expect to live? “We try to help them manage that new contract with cancer,” she says. Willow has a new Internet initiative that enables women living with metastatic cancer to connect with others in the same situation.
Willow gets no government funding. In the world of big, established cancer agencies, it's a midget. Willow's people do a lot with very little. Sometimes, the most important thing they do is listen.
