TORONTO - For most women, there are few more terrifying words to hear than: "You have breast cancer." Unless, of course, it's being told the recommended treatment is having both breasts lopped off, followed by round after round of chemotherapy.
But seven years after Myrtle Lewis had a double-mastectomy and 11 lymph nodes removed, followed by six months of dreaded chemo, she heard something even more devastating.
She'd never had cancer at all.
The 61-year-old is among almost 400 women in Newfoundland and Labrador whose breast cancer tests were bungled by a St. John's pathology lab, and she is adamant that anyone given a diagnosis of cancer should seek a second opinion before committing to treatment.
"I've told everyone I've talked to: 'Don't take the risk,"' Lewis said from her home in Roddickton, on Newfoundland's northern peninsula. "I know a lady, 84, diagnosed last week with (cancer in) both breasts. I had to say to her, 'Listen, make sure you get a second opinion on this before you go and have anything done."'
At the time of her diagnosis in mid-1999, the mother of five and grandmother of seven never thought to question what the doctors told her or to consider that test results could be wrongly interpreted.
"I always had faith in the doctors. I figured they're putting you under the knife, they know what they're doing," said Lewis.
"But not anymore."
Many people feel reticent about seeking a second opinion, worried they will anger the physician upon whom they rely for treatment or feeling too intimated by white-coated medical professionals to question their knowledge and authority, experts say.
But Dr. Mark Clemons, head of breast medical oncology at Toronto's Princess Margaret Hospital, said patients have a right to ask for their diagnosis to be confirmed.
"I would say to them: "Speak to your surgeon if he's done the procedure, speak to your family doctor if he's done the procedure and make sure your health-care professional is satisfied with the result," Clemons advised.
For example, if a patient has a skin biopsy for a suspicious-looking spot and the report comes back negative for cancer, "then you as a patient can request that the health-care professional get in touch with the pathologist," he said.
"So we do that. We read these reports and we often, not quiz, but question the pathology, just to see if it all makes sense."
Yet Clemons admits it's easier for patients getting care in big-city hospitals with pathology departments with generally more pathologists on staff, even though they are often overwhelmed by an ever-rising workload.
"That may be more difficult if you're in a community practice far away from a lot of colleagues."
Observers have suggested that might have been one of the problems at St. John's-based Eastern Health Authority, which performed breast cancer tests now under scrutiny by a judicial inquiry and the subject of a class-action lawsuit representing Lewis and other women.
Dr. Bill Hryniuk of the Cancer Advocacy Coalition of Canada said residents of small cities or rural areas have good reason for concern when given a diagnosis of cancer or other critical illness because smaller centres tend to have few pathologists.
"They should request of their oncologist assurance that the tests that determine the treatment they're being given was done and checked," he said from Dundas, Ont. "It may have been done in a regional hospital, but it should be checked against results from a large cancer centre-affiliated hospital."
"If you're an individual cancer patient, you have a tumour, and your doctor's trying to decide what treatment to give you, make sure that the tests done upon your tumour are done in a laboratory which is used to doing large numbers of these tests and has a good quality-control mechanism."
Hryniuk, a retired breast cancer oncologist who now volunteers for the patient advocacy organization, said he is not criticizing Canada's pathologists, who are critical to cancer and other health care but are chronically underfunded and burdened by too much work.
"You can't blame the donkey for dropping dead in the tracks from overwork; you have to lighten the load or get another donkey," he said.
"I think the Canadian public has got to put more money into health care."
Despite widespread complaints about shortages of doctors, nurses, technicians and other care providers that often lead to lengthy wait times for patients, Canada is no different than other countries when it comes to misdiagnosis rates, according to Best Doctors Canada.
Best Doctors provides second opinions on serious illnesses by international experts for members of the plan, which is usually purchased by companies as an employee benefit.
Worldwide, about one-quarter of its reassessments disagree with initial diagnoses, no matter what type of health system a country has, said Dianne Carmichael, president of the Canadian arm of U.S.-based Best Doctors Inc., which was started by two Harvard physicians 20 years ago.
"We know there's a lot of fragmentation in health care, so not all of the physicians are able to connect with everyone," she said. "So one of the things we're able to do is attempt to relieve that fragmentation because we look at the patient holistically, we gather everything about them."
"So we take nothing at face value, we redo everything."
Still, Dr. Jean-Martin Laberge, director of pediatric surgery at Montreal Children's Hospital and an adviser to Best Doctors Canada, said it wouldn't be practical or possible for every non-member Canadian to seek a second opinion about their diagnosis.
"I think it's more important to get our health care back on track rather than saying to everybody you need a second opinion because the system is failing," Laberge said. "I don't know that would solve all the problems."
Lewis says her misdiagnosis has left her tortured and the family "damaged for the rest of our lives."
"For the seven years when I'd take off my clothes and go to bed, I'd look at myself and the scar, and the only consolation was, 'Well, at least you're alive.' But now when I go and take off my clothes ... it's worse than dealing with the fact that you had the cancer."
"Who wants to go around with a chest like a man? You can't wear low-necked tops because you see everything, the scar right on across," she said, quietly weeping. Nor can she wear makeup any more or go in the sun without covering up because of lingering effects from the chemotherapy.
Lewis said she received a written apology from the Eastern Health Authority, but "Sorry isn't going to cure what has happened, is it?"
And as for any money she could be awarded if the class-action suit is successful, Lewis is dismissive.
"Your health is damaged, even mentally, right? Money will never replace what I've lost."
