• 9/12/2004
  • QUEEN’S PARK, Canada
  • by ROB FERGUSON
  • TORONTO STAR

Nurse Lydia Biel, 55, used her inside knowledge to get an MRI when she was diagnosed with cancer in 1999, telling hospital officials she was “available for a cancellation anytime, anywhere.”

When a dental oncologist confirmed she had tongue cancer, Lydia Biel went from a sense of denial — “I just thought she was a dentist” — to sensing a clock ticking. That’s when the Toronto nurse began using her inside knowledge of the health system and working the phones, making sure she got an MRI quickly to map the malignant growth and get into surgery.

She did not want to get stuck on a waiting list, after hearing news stories in the past about patients biding their time for weeks or months, or seeking treatment outside Canada for fear that waiting in line here could allow the cancer to grow too strong.

Tomorrow, the premiers will meet in Ottawa with Prime Minister Paul Martin for a summit on health care; among the topics of discussion will be Martin’s goal of cutting wait times for medical procedures. There is no firm data on how long patients wait for diagnosis and treatment of cancer in Ontario, although wait times for radiation treatment of tumours range from one to 12 weeks, depending on the type of cancer and where you live. Four weeks is generally considered the longest anyone should wait.

“I massaged the system,” recalls Biel in the 16th-floor waterfront condo she and her husband bought to treat themselves after her bout with cancer. “I do remember calling them up and saying I was available for a cancellation anytime, anywhere.” And so it was that Biel found herself at Princess Margaret Hospital at 8 p.m. on a Saturday in June, 1999, followed by dinner at a restaurant with her husband.

It was her last dinner out for a while. Ten days later, she was back at the hospital to see a surgeon. A week after that, Biel was on an operating table for what she calls “commando surgery” to oust squamous-cell carcinoma that had spread beyond her mouth. Biel spent 11 hours on an operating table, cut open from her lower lip, through her chin and all the way down her neck in a semi-circle over to her right ear. Her surgeon, Dr. Jon Irish, put her dissected chin back together with a steel plate. The diseased part of her tongue was replaced with a muscle from her arm.

`A lot of it is your skill set as a patient, what you know and what you don’t.’ This summer, five years later, Biel was pronounced clear of cancer.

Given what she endured — it was months before she could speak normally — Biel has no regrets about talking her way into a quick MRI. “It’s taking charge yourself,” says Biel, 55, now a homeopath in private practice at Dynamis Health in Etobicoke. “Don’t be passive about it. You have to get involved. If you’re too sick to advocate for yourself, someone has to advocate for you.”

The system shouldn’t force patients into that position, says James Kreppner, a lawyer with hemophilia who contracted HIV and hepatitis C from tainted blood 20 years ago. “A lot of it is your skill set as a patient, what you know and what you don’t. That isn’t fair. That’s a lot to ask of someone who’s sick.”

While medical treatment follows the same standard once the system gets to you, getting the diagnosis quickly is often the trick, adds Kreppner, an activist with the Canadian Treatment Action Council and a board member at Canadian Blood Services. To that end, Cancer Care Ontario is hoping to build what it calls “diagnostic assessment units,” where patients could go for one-stop diagnosis and testing so they get all the tests and biopsies, MRI or CAT scans in quick succession.

If Biel hadn’t been a nurse, she might not have persisted in getting treatment for her tongue problem, which flared up during a vacation in Colorado. She was eating lunch with friends when she bit down on her tongue. It hurt, but no more than usual. Looking in a mirror, she noticed what looked like a chancre. Two weeks later, it was still there, and her throat became sore, prompting a visit to a clinic. “The doctor said the sore throat would go away, and he didn’t want to see my tongue, even when I pointed it out,” says Biel.

“Had I listened to him …”