Vik Adhopia is the CBC's national radio reporter in Newfoundland.

Dr. Robert Deane sighs heavily as he recounts his wife Peggy's last years of life. "With cancer, it's just bad news, after bad news, after bad news." His dark assessment of Peggy's losing battle with the disease came during his testimony before the Commission of Inquiry into Hormone Receptor Testing, a provincial inquiry that is tearing Newfoundland apart and probably not doing much for the confidence of cancer patients right across the country.

George Tilley, the former CEO of Eastern Health, apologized for the way the health authority handled the problem. (Rhonda Hayward/Canadian Press)

Margaret 'Peggy' Deane, a nurse and mother, was diagnosed with cancer in 2002 after discovering a lump in her breast. Over the next three years, the disease would advance to her liver and spine and would cause her to endure the ravages of a mastectomy and chemotherapy.

For breast cancer patients, the critical element in determining the course of one's treatment is what is called the hormone receptor test. If a patient's hormones stimulate or "feed" the tumour, the patient is considered ER/PR positive and therefore treated with a hormone-blocking drug like Tamoxifen.

Despite its severe side effects, the drug is considered the best hope for many patients. In Peggy's case, the test concluded she was ER/PR-negative, so Tamoxifen was not prescribed.

But her husband Robert, a pediatric surgeon, was determined to do something more for his wife. So he sought the help of cancer specialists outside the province and persuaded an oncologist at the prestigious Sloan-Kettering Cancer Centre in New York to review Peggy's case. The oncologist suspected Peggy Deane's cancer had to be hormone-related because of the type of tumour she had.

Peggy was retested in Newfoundland. The U.S. oncologist was right. Robert recalls being told of the error in April 2005 by her doctors. "That," he said, "was a great shock."

Avalanche of errors

The implications of the mistake did not seem to register with Peggy, who was heavily medicated with morphine and dealing with the excruciating pain of the disease now in its late stages.

Still, the Tamoxifen offered a cruel glimmer of hope. "Her particular tumour seemed to be fairly responsive to the Tamoxifen," Robert noted. Though how effective it might have been if administered earlier, "we'll never know."

The treatment came too late for Peggy Deane. She died in August 2005 and her case became known as the "index case" at Eastern Health, the health authority for eastern Newfoundland. The retest of her tissue sample triggered the discovery of an avalanche of errors with hormone receptor testing in Newfoundland and Labrador.

As a result of this finding, officials at Eastern Health made the unprecedented decision to retest more than a thousand breast cancer patients who were diagnosed ER/PR-negative between 1997 and 2005. The review found hundreds of other Peggy Deanes who had missed their chance at anti-hormone drugs.

Of the 1,013 breast cancer patients retested, 383 — more than a third — were found to be falsely ER/PR-negative. That meant 383 patients were denied a fighting chance against cancer. More than 100 of those wrongly tested patient are now dead.

What's more, in another cruel twist, it would later come out that not all of those affected were even notified that a mistake had been made.

Culture of secrecy

As news of these developments spread, patients and their surviving families demanded to know why they were not informed when the error was first identified. But it wasn't until CBC News and other national media ran stories in May 2007, revealing the disturbingly high rate of errors, that the Conservative government of Danny Williams finally called a commission of inquiry to get at the truth.

Soon after beginning their work, lawyers for the inquiry discovered external audits of the pathology laboratory that had done the initial testing. These audits revealed a troubling lack of standards, training and quality control, the inquiry has been told. There was also some indication that these technical deficiencies were identified as early as 2003, two years before Peggy Deane's case.

But after the first few weeks of testimony at the inquiry by patients, cabinet ministers and health officials, it became increasingly clear that the "botched tests" encompassed more than technical problems at the St. John's lab.

Right from the early days, when the problem with Peggy Deane's test was discovered in 2005, a culture of secrecy took over at Eastern Health and filtered up to the provincial government.

That wasn't the intention of the former CEO at Eastern Health. George Tilley testified he believed patients had a right to know about the lab errors immediately. But he said he was urged against going public by managers, senior physicians and lawyers at Eastern Health.

The provincial ministry of health and officials in the premier's office were notified early on as well. But they also remained publicly silent on the problem, deferring to the judgment of Eastern Health.

In their internal correspondence, senior managers and staff at Eastern Health seemed to feel that bad publicity was to blame for the growing scandal rather than the decisions of the organization.

In one e-mail from 2005, a spokesperson wanted to "hold off" a reporter's queries, writing: "That way, the issue should be dead again by the time the House opens again next week." Another e-mail rebuked a breast cancer survivor and the Canadian Cancer Society for criticizing Eastern Health publicly.

The thousands of pages entered into evidence so far showed that little of the discourse between physicians and bureaucrats involved their ethical obligations to patients.

Who was in charge?

As the evidence is making clear, Eastern Health was not making all the decisions on this problem itself. During the life of this scandal, from 2005 until 2007, there were three different ministers of health in Newfoundland and Labrador.

Based on his testimony, the first, John Ottenheimer, appeared satisfied with the way the health authority was handling the situation. The second minister, Tom Osborne, tried to get more answers, but his own staff may have kept information from him.

It was only when the current health minister, Ross Wiseman, became unhappy with Eastern Health's explanation for the testing errors that an inquiry was called and the full startling extent of the problem became known.

According to their testimony, all three ministers seemed to be the last to find out about the full depth of the crisis, while their staff fumbled their way through what would turn out to be the province's biggest health failure.

As for Eastern Health, its decision making during those crucial two years (2005-2007) when it didn't notify patients about the testing error seems to have contradicted its own policy manual. The section entitled "Critical Ocurrence/Incident Review" outlines how "Arrangements should be made as soon as possible to meet with the patient or substitute decision maker to disclose what is known about the event."

As for the high margin of error for the hormone receptor tests, the problem seems fixed. Eastern Health has already overhauled the policies and procedures at its pathology lab.

What if?

Regarding the 383 breast cancer patients whose tests were misdiagnosed, it is hard to say whether the outcomes would have been different if Eastern Health had followed its own policies and simply informed all its breast cancer patients as soon as the problem was detected.

Some may have opted for Tamoxifen immediately and lived longer, but none of that is certain.

What is certain, though, is that the testing scandal has left a painful legacy of "What ifs" for Dr. Robert Deane and others. "If it had been diagnosed positive from the get-go," he says, "the whole course of the disease would probably have been a lot better and [Peggy] probably wouldn't have had to endure the types of chemo that she had."

Then there are patients like Rosalind Jardine. She learned about the error six long years after being diagnosed with breast cancer. And like Peggy Deane, the correct treatment came belatedly. Her cancer has now spread to her bones and bowels.

She told the inquiry, "I second-guess everything. I would suggest [doctors] second-guess themselves more. Or start to if they haven't.

"When I go in for my three-month overhaul — CAT-scans, bone scans — I'm fearful. Will this result be [accurate] as to what is actually happening in my body? Will it be read correctly? My trust is gone."

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