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'I made noise, and things moved'

From Saturday's Globe and Mail

On a September morning, five days before surgery to remove her cancer, Virginia Yule saw her seven-year-old son, Alex, off to school, made a cup of tea and began typing a letter on her computer — to her doctor.

“There are a couple of things I would like to share with you,” she wrote, “which may help us decide how we are going to tackle this nasty stuff.”

She went on to tell her surgeon about Alex, her only child. He needs me, she explained, for at least four more years. He has to fix his table manners.

“After that, there is sex,” she wrote — she had to be there for those talks, “because his father is crazy!”

Then she needed to see him off to university. And later, to hold her first grandchild. “So you see, I have to beat this,” she declared. “And I will.”

Ms. Yule did not want to be another anonymous breast lying on the operating table. She had met her surgeon only twice, for a total of 45 minutes — to learn she needed a biopsy after a mammogram found a shadow on her breast, and then to be told she had cancer.

So she wrote the letter.

“I really wanted her to know who I was,” she says now, cancer-free for seven years. “I needed her to treat me like I was the best patient she had ever operated on, and I was going to be her biggest success story. And I needed to give her a reason. So my reason was that I had a seven-year-old son with terrible table manners.”

Ms. Yule was then 49, living in a country home in Caledon, Ont., and running a family business with her brother, selling birdfeeders.

With its forthright and chatty tone, her letter, faxed off to the doctor's office the morning she finished it, defined how she saw herself as a patient — equal, informed and with an identity beyond the tumour in her breast.

While expressing respect for her doctor's skills, she also wrote that she planned to call her surgeon by her first name, because “we are sharing such an intimate part of my life.” She concluded: “I have the utmost confidence in you, and I hope to earn yours too.”

Ms. Yule's desire to be seen as a person is a common complaint among cancer patients caught in a system that seems overwhelmed by waiting lists and swamped by test results, where phone calls tunnel through to voice mail and a busy doctor may have mere minutes to explain the most complicated, heart-stopping medical information.

Lynda Coghill recalls how her doctor barely spared a few seconds to deliver a curt death sentence. The Newmarket, Ont., school teacher was diagnosed with ovarian cancer at 39. At an appointment after surgery and radiation, she told her oncologist she was still bleeding. He did a quick exam, announced she had a new tumour, and said bluntly: “Your chances are slim to none.” He told her to wait a few weeks for the results of a biopsy, then left to treat a patient down the hall.

“I looked at the nurse in sheer disbelief,” Ms. Coghill says. “The doctor had proceeded to tell me, in less than 30 seconds, that I was going to die. He didn't seem to care that I had three small children.”

She cried for days, unable to eat or sleep. She and her husband planned her funeral. At last, she contacted the sympathetic nurse from the doctor's office and persuaded her to call for an “unofficial” biopsy report. The tumour was benign. Eight years later, Ms. Coghill remains angry about having been treated “like a numbered object on an assembly line.”

To get the best care, patient advocates say, it's not enough to wait passively in an appointment room. You have to go out and get it.

On diagnosis, the modern patient scrambles to the Internet for an instant briefing, collects copies of their CT scans and learns the direct line to the doctor's office. Many have created their own online blogs to chart their cancer experience and trade information with people in similar situations.

When Montreal resident Christine Leibovict heard that her radiation treatments might be delayed, she was 27 years old, and facing an aggressive form of breast cancer: She could not wait. She made repeated calls to the hospital ombudsman, and her local MNA, and eventually she started radiation on time.

“If anyone showed impatience, I didn't let that faze me,” she says. “I made noise and things moved. You have to make things happen for yourself.”

Now two years later, the cancer has returned, in her hip bone, and this week Ms. Leibovict started chemotherapy again. At her first appointment with her oncologist, he sat down in his chair, opened her file and started talking. “He didn't ask how I was doing,” she recalls, “or how I was feeling about the recurrence.” She felt rushed. He dismissed her questions.

So she found a new doctor – and a treatment option she preferred – using contacts with medical professionals and other cancer patients she had met during her first bout.

Not every patient has Ms. Leibovict's determination. Study after study has proposed that cancer clinics need people trained specifically to help Canadians travel through the system. In Nova Scotia, the provincial cancer agency has hired “patient navigators” who guide people newly diagnosed through the befuddling maze of specialists, treatment, support services and logistical problems inherent in a province where half the population lives outside towns and cities.

Joanne Cumminger is a patient navigator in New Glasgow, with a caseload of 50 patients a month. She works with seniors without rides who are expected to travel two hours to Halifax for radiation, people wanting second opinions or struggling to pay for anti-nausea medication without drug plans, and plenty of patients unable to read, let alone search the Internet.

“This is a whole new world for them,” she says. “They need information to make decisions. And if you make a decision, you live by that decision and are more comfortable with it.”

In addition to Nova Scotia, Alberta and Manitoba are now recruiting for navigators. Quebec has nurse navigators in its hospitals, and the British Columbia government recently made money available to hire navigators in the northern part of the province. The B.C. Cancer Agency also created a program that would give family caregivers more training about the health system, medication and side effects.

In Regina, a former emergency-room nurse named Mary Klaassen works full-time out of an office at the Canadian Cancer Society, serving as private detective, emotional support, researcher and general agitator for the patients who call her each week.

Ms. Klaassen is the only independent patient advocate in the country; she is not attached to any health-care facility, and a patient can call her with assistance for just about any problem.

She helps the farmer who needs his animals tended while he gets radiation. She gives advice on income tax and disability insurance. When test results are late, she makes calls. She helps people skip long wait times for surgery in Saskatoon by hooking them up with a less busy urologist in Swift Current. She has driven a mom with four kids to the food bank.

Earlier this year, she received a call from a man looking for a real estate agent to sell his house — he had received an unexpected $25,000 bill from British Columbia for surgery four years earlier to remove a melanoma from his pupil.

“Take a deep breath,” Ms. Klaassen told him, “have a cup of coffee and let's not think about selling your house until we figure this one out.” More than a dozen phone calls later, she had an answer for him: There'd been a mix-up over which province would cover the surgery, and now Saskatchewan was going to pay the bill.

His case, she says, is typical: Patients often defer to the system, even when it makes mistakes. “We were taught that the doctor knows best and everything will work our fine,” she says. “But that day and age has slipped us past. Things are different. Faxes don't go through. Paper gets stuck in the system.”

When she calls to check on an MRI or surgery date, she sometimes learns that the doctor's office booked it but forgot to call the patient. She has watched overworked doctors flip through piles of pathology reports: “He's glanced at it, he's gleaned it, he's had his hands on it.” But he doesn't realize a stressed-out patient is at home waiting for news.

“Follow your paper,” she tells patients. Collect copies of every test. If results don't come on time, get on the phone. Make it clear you'll come in for a test or surgery on a cancellation. “It's okay if the person in charge of the wait list knows your name,” she says. “I would rather risk having a scheduler annoyed with me, than pass up on a chance to come in at an earlier time.”

After hearing her surgery was going to be delayed for weeks, one ovarian cancer patient in Toronto (who doesn't want to give her name for fear of alienating her doctor) collected the contact information for the surgeon's office, her secretary and her nurse. She started making calls every few days, leaving emotional midnight messages and firing off pleading faxes. “I poured my heart out,” she says. Within 10 days, she had her pre-op appointment.

Sandeep Sehdev, an oncologist who sees roughly 40 patients a day at the William Osler Health Centre in Brampton, Ont., agrees that people need to be assertive about their relationship with their doctor. But he says they also have to be realistic about treatment outcomes, and accept that waiting a few weeks between surgery and chemotherapy, for example, may be necessary so they can regain their strength.

Dr. Sehdev says that one of the biggest stresses in the patient-doctor relationship is drug coverage: Doctors are often placed in the untenable position of recommending a treatment, such as Avastin for colorectal cancer, that isn't paid for by the province. But most of the time, he says, the relationship works well: “I always tell my patients I want to treat you the way I would a family member with cancer.”

He doesn't mind when people bring in information from the Internet, but says they need to be careful of what they find there. A recent U.S. study found that 75 per cent of people using the Internet for health research do not regularly check the sources of the advice.

“People when they have cancer can be very vulnerable to misinformation,” Dr. Sehdev says. “Doctors don't just pooh-pooh things arbitrarily.”

People with cancer have to decide what kind of patient they want to be. Not everyone finds it helpful to hear that less than 40 per cent of ovarian cancer patients are still alive after five years. Some are happy simply following their doctor's advice. But for those who want to learn every medical detail, Dr. Sehdev keeps 50-page information packages on file for specific cancers, and directs them to reputable websites.

Julie Easley, a PhD student in Fredericton, was one of those patients who needed to know everything. She was 23 year old when she was diagnosed with Hodgkin's lymphoma – the doctor said it was a blood disease, “treatable with drugs.” It wasn't until she got home and went online that she learned that it was cancer and would require chemotherapy.

She arrived at her next appointment with a list of 40 questions. She developed a close relationship with her neighbourhood pharmacist for advice on side effects. She kept a daily journal on how she felt, and recorded everything she ate; when she was too sick, her mother made entries for her. Whenever the doctor asked questions about her condition, she could flip open her journal and answer precisely.

“I had to learn to be sick,” says Ms. Easley, now 31 and cancer free. “It's not just a matter of going in and receiving information. This is your life.”

As for Virginia Yule, she received a phone call from her surgeon the same morning that she faxed off her letter. Laughing, the doctor took a few moments to answer Ms. Yule's questions. When she was wheeled into surgery days later, she no longer felt like a nameless body on a slab. “The fact that she called me back was a gift,” Ms. Yule says. “It was such a wonderful relationship we had — until she broke up with me because I didn't have cancer any more.”

With a report from Margaret Philp

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