Deprived of a fair fight in the battle against cancer

Jessica Leeder

ST. JOHN'S From Saturday's Globe and Mail

Since she found the lump in her breast in 2001, Beverly Green's clock has been ticking steadily down.

At various points, doctors have posited when her time will run out. In 2006, after recurring cancer had riddled her liver with tumours, the span was a few years; it narrowed to six months when drugs caused the cancer to further explode, then widened again after chemo.

During a bout of fever last year that prompted Ms. Green to drag herself to the hospital alone in the middle of the night, she was told she could be dead by morning. She was discharged at 6 a.m.

"I don't really plan on dying," Ms. Green, 45, said in a recent interview, her pallor artfully disguised beneath rosy blush and cranberry lips, her sea-blue eyes flashing under light brown eyebrows she had dusted on.

Ms. Green knows she's in the throes of a wicked fight. Aside from falling prey to a ravenous metastasizing breast cancer, Ms. Green, like several hundred more cancer patients in Newfoundland, is a victim of the province's breast cancer testing scandal.

For eight years, botched tests went undetected by Eastern Health, the province's largest health authority and only centre for cancer testing and treatment. In 2005, after retesting more than 1,000 cases, the authority discovered hundreds of patients had been given wrong test results and had their chances of beating the disease unknowingly slashed.

Last month, Newfoundland's Supreme Court ordered the release of several reports Eastern Health kept secret for two years, which offered damning analyses of the quality of work done in the lab.

"You had a feeling when you read that there were people there who didn't know what they were doing," said Minnie Hoyles, 59, who was given wrong test results when she was diagnosed with breast cancer nine years ago. The lab is responsible for all of the province's high-level cancer analyses, called immunohistochemistry tests, including the critical hormone-receptor tests done for breast cancer patients. Typically, results from the test provide a foundation for a patient's entire cancer treatment plan.

With revelations from the reports still reverberating across the province, a public inquiry into the testing scandal is set to begin Tuesday. It remains to be seen whether it will allay spreading insecurities about the quality of cancer care in Newfoundland. Some women who were given incorrect test results told The Globe and Mail they fear that speaking publicly — to the newspaper and at the inquiry — about the impact of the scandal on their lives will jeopardize their chances of getting good cancer care if they get sick, or sicker.

"After you have cancer, it's a life of dread," Ms. Hoyles said.

Gerry Rogers, a St. John's-based documentary filmmaker who is one of the women who received wrong test results, said the scandal should be a "wakeup call" for Canadians.

"When you're dealing with cancer, you need to feel totally confident. Our health-care system, since the [Paul] Martin government, was chipped and chipped and chipped away at," she said. "As Canadians, we have a right to excellent care, universal, excellent care across the country."

A horrifying discovery

The realization that something had gone horribly wrong with tests in the province's immunohistochemical lab, which processes about 1,000 sophisticated cancer tests each month, began to set in during the spring of 2005. For years, high staff turnover rates and a lack of resources had been plaguing the lab, causing it to issue occasional "unreliable, erratic" tests results, according to internal lab reports.

"It was happening in oncology and it was happening in pathology. They were chronic areas in health care that were underfunded and understaffed," said Kara Laing, the province's lead oncologist. "You're busy and you're flying by the seat of your pants. It's not as easy to look for trends or to find things."

The extent of problems created by that cycle didn't begin coming to light until Joy McCarthy, one of the province's medical oncologists, stumbled across them while troubleshooting for a breast cancer patient who wasn't responding to her treatment plan.

Retesting of the patient, who has not been publicly named, revealed that the lab had given the woman — and Dr. McCarthy — incorrect test results three years earlier. As a result, the patient was told she was estrogen receptor negative.

This meant she wasn't eligible for the hormone therapy Tamoxifen. The largest-selling breast cancer drug in the world, Tamoxifen is given to eligible patients and can drastically reduce rates of recurrence.

A handful of other similar cases were retested. When officials learned that they, too, had been given wrong results — meaning all the patients' treatment plans were based on false information — a probe was launched to see how many victims had missed out on medication that could have vastly improved their prognosis.

"Was this one or two people, or was it going to be 100 people? We had no idea," Dr. Laing said.

Exactly how many patients were affected is still unclear. Eastern Health retested results of more than 1,000 patients who, between 1997 and 2005, were told they were estrogen receptor negative. By the end of 2007, more than 300 of that group had died, although it is unknown how many died as a result of cancer, said Dr. Laing.

Of the 1,000 retested, more than 300 learned they were originally given incorrect results. In turn, many were belatedly offered hormone treatment.

The ones not retested

There is also a second faction of patients, ones who had tests done at the lab but did not have their results redone after the scandal broke. They originally tested positive for hormone receptors and, therefore, wouldn't have missed out on the treatment. But many have begun to worry that their positive diagnoses were incorrect — and that they received toxic treatments they didn't need.

Dr. Laing confirmed that most patients who first tested positive were not included in the retest. The restrictive review has bred concerns that more troubling results have been brushed aside.

"I feel like I got pushed under the rug," said Pam, a 47-year-old stay-at-home mom from Mount Pearl who asked that her last name not be used.

Diagnosed with breast cancer five years ago, she began to have anxieties about her treatment when she learned of the testing scandal. She asked that her positive results be retested. However, doctors refused the request because she wasn't denied hormone treatment.

When she was diagnosed, Pam was put on Tamoxifen — a five-year treatment with side effects that include heart, eye and bone problems, and increased risks of developing ovarian and uterine cancer. She seems to have contracted a bad cocktail of those effects. Her eyesight is failing. In 2006, her cancerous ovaries were removed. Currently, she's having monthly Pap tests so doctors can monitor precancerous cells in her uterus.

"So, am I a ticking time bomb? My doctor thinks I'm getting obsessed with questioning the health-care system. I probably am," Pam said. "The not knowing is not going to go away until I know it is retested and the initial test is affirmed. I could have been on the wrong drug. Instead of having my breast removed … my body wouldn't be mutilated. Maybe I wouldn't have had ovarian cancer. For all of the things I've endured, maybe I didn't need to."

Even for those whose test results were reversed after the review, questions still linger about whether their cancer battles could have been less painful or better fought. Many oncologists agree that hormone therapy is more likely to work when given early in treatment. Still, Ms. Hoyles and a slew of other patients whose test results were reversed have opted, years after their original treatments, to take the pills as a kind of insurance therapy. It remains to be seen whether the benefits will outweigh the side effects.

"I remember going in, crying, practically begging for Tamoxifen," Ms. Hoyles recalled of her original 1999 diagnosis. "I know it's only medication. It's not foolproof. I wanted to do anything to prevent [a recurrence]."

For Ms. Green, news of her eligibility for that last-ditch therapy came too late. In the midst of yet another round of chemo to keep her liver cancer at bay, she jokes about why she's been placed at the top of the roster to testify at the inquiry next week. But there is worry in her voice. She's attuned to the fact that she may not live to learn the results of the inquiry, let alone the victims' class-action lawsuit, which will sit paralyzed until the inquiry is through.

"I know I have an illness I'm probably going to die from," Ms. Green admitted last week. She added: "I do think this deserves some kind of fight. People make mistakes. Things happen. But this is a lot of people. It's a lot of mistakes.

"Maybe we can stop it from happening again."

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