ST. JOHN'S, N.L. — There were more than 400 breast cancer patients affected by the testing errors that prompted the Cameron Inquiry.
Many are gone — Eastern Health is unable to provide that number. (It’s not known if a change of treatment would have changed their outcome.)
Here are some of the stories of family members left behind, as well as two patients who consider themselves lucky to tell their own stories.
‘It was quite jarring’
Christine Purcell remembered by her husband
There was that time a nurse co-ordinating record-keeping phoned Bryan Purcell eight or nine years after his wife, Christine died, and spoke to him as if she was still alive.
“This woman had it completely wrong and it added to the sense these people hadn’t learned the lesson,” Bryan Purcell said in a phone interview.
“It added to the hurt, but I couldn’t handle that they hadn’t learned the lesson. It destroyed my confidence that things were different.”
Back in 2008, Bryan Purcell testified at the Cameron Inquiry — painful, awful testimony that shed light on what could have happened to flag the hormone receptor testing errors.
In Justice Margaret Cameron’s 2009 report on a 12-year health-care tragedy, pages 162-163 spoke of what could have been.
“Despite the uncanny similarity between her case and that of Peggy Deane some six years later, it appears no investigation was carried out in the cause of Ms. (Christine) Purcell’s discrepant (estrogen receptor/progesterone receptor ER/PR) test results,” Justice Margaret Cameron wrote.
“One cannot help but wonder how the ER/PR story would have turned out had such an investigation taken place in 1999. Perhaps there would have been no ER/PR story.”
Purcell and Deane were two of the breast cancer patients who received inaccurate results from hormone receptor tests — used to determine treatment options — from 1997 to 2005 at the General Hospital’s immunohistochemistry lab (IHC).
Purcell was diagnosed with breast cancer in 1998 and died in 2000. In 1999, her hormone receptor results changed, just like Peggy Deane’s would years later because of a second opinion from the U.S.
A decade after the Cameron report was released, Bryan is remarried, and he and his wife divide their time between Connecticut and Newfoundland.
Christine, who was just 46 when she died, was a Grade 4/ 5 teacher. he said.
“That added to the burden and sense of loss when you find out there might have been a chance for some other treatment." — Bryan Purcell
“She loved to do cross stitch. She loved her job and she was a good mother. We have one daughter and she was a wonderful mother in fact. We were a close family,” Bryan said. “Obviously finding out she had breast cancer was a big blow.”
They were married for 24 years — they met when she was 19 and he was 20.
Bryan recalled Christine’s older sister had beaten breast cancer years before his wife was diagnosed.
But between Christine’s diagnosis and death was only about 20 months and there were several rounds of chemotherapy, as well as radiation, he said.
Bryan remembers bringing the second opinion from a cancer specialist in Boston to doctors’ attention at the Health Sciences Centre.
“We certainly told them. … They didn’t seem to make much of it at all,” he said.
The enormity of it all was slow in coming and then there was the realization when the scandal hit the public years later.
“That added to the burden and sense of loss when you find out there might have been a chance for some other treatment,” Bryan said.
“Now again, in my wife’s case the other treatment might not have accomplished anything, but it was all part of that sense of the system was not working as it should. And we certainly confirmed that. It was a quite jarring not only personally but to look at the health care system being that much in error and that incapable,” he added.
In the years since, he has his own dealings with the health care system — including finger amputations and heart surgery. All went well, and although he said overall Eastern Health is a competent organization, there will always be doubt.
“They talk about having made all these changes and their diagnostic and approaches are different, but whenever I hear anything from Eastern Health, I always have that lingering suspicion behind what I am hearing. Are they really on top of this?” Bryan said.
Having spent 30 years in government management that impacted people’s lives, he said it’s a question of accountability.
“What’s done is done, but you bloody well better make sure you are doubly aware in future of the responsibility you carry to rise to the occasion to do what needs to be done to make sure you’re operating properly,” he said.
‘It wasn’t in her nature to go as public as that’
Bev Green remembered by her brother
In March 2008, Beverly Green, wearing a knitted cap, was the first breast cancer patient to testify at the seven-month-long Cameron inquiry examining devastating errors in tests to determine treatment for breast cancer patients.
“Her statement was basically I don’t hold a lot of ill feeling towards the physicians themselves,” her brother Terry Greene said.
“She did feel very strongly about the way it was handled by Eastern Health. She felt her specialists were caught in the middle between their patients and the administration. It was more a ‘What are you going to do about it. What are you going to do to solve this for the patients in the future who are going through this system in the future?’ That was always her focus in life,” he added.
The great job she did representing herself and other patients sticks in Greene’s mind all these years later.
“She had the confidence and the boldness to do that, it wasn’t in her nature to go so public as that.”
At age 50, Green died of a different type of cancer. She never gave up her business even while enduring treatment.
“Bev herself was very forgiving of the whole process,” her brother said.
She had hoped to make a point and to have Eastern Health learn from the experience and then get on with life.
“After that inquiry, she didn’t want to do any more interviews, talk about it anymore. She went back to her business. She went back to her friends. She went back to her family and to the day that she passed of the liver cancer. She was as positive as ever about life,” Greene said.
Greene — older by five years — is her only sibling. His sister had lost her husband, the love of her life and founder of Ziggy Peelgood’s fries, John Hrabowsky, also to cancer after she had been already been diagnosed.
“She didn’t stop long enough to think about it. She continued to work her business, to work 10-12-hour days — a couple hours back at the hospital for treatment and back to work again,” Greene said.
“When you live that kind of life, you don’t take a lot of time to think about what’s happening to me right now. It kind of ends up being of secondary importance because you are just trying to keep yourself going,” he added.
She sold the company before her passing.
Greene went through prostate cancer treatment a few years ago and he was persistent in asking all the right questions in regard to treatment and tests.
“I probably did have it in the back of my mind how does this system really work when it comes down to caring for a patient. But I have to say I had nothing but terrific care by specialists, absolutely nothing (negative) to say about Eastern Health in terms of the environment and the professionalism. Any giant bureaucratic system comes with the potential for flaws, he said.
“It has a huge potential of being impersonal, of being callous, of being disrespectful of patients because of the hugeness of the corporation itself, the number of people who are involved, the number of hands that touch a single patient’s diagnosis, treatment and that sort of thing,” Greene said.
Had his sister survived, her focus would be on family, friends and enjoying her life her way.
“She would probably be working in some retail position, wowing customers all day long because that is the way she did it,” Greene said.
“She wouldn’t have been holding onto this stuff at all. She would have gotten past it and went on to the next phase of her life.”
‘I am totally blessed’
Minnie Hoyles’ granddaughter and step-grandchildren are her joy.
“I am totally blessed, I must say,” said Hoyles, a breast cancer patient among those who received the wrong hormone receptor test results, and was one of the faithful attendees at the Cameron Inquiry hearings in 2008.
A drug she got contributed to her heart failure, Hoyles said. But despite struggles associated with that, the Mount Pearl woman is enjoying her time with family.
Sadly, she lost her sister to breast cancer in late 2017, roughly a year after being diagnosed.
“Really boy, that killed me, she said.
“She wanted to live; I guarantee you. She fought to the end. She and I used to go all the time to Tim Hortons,” she added.
Hoyles met a lot of other breast cancer patients at the hearings and is heartbroken whenever she hears of those who didn’t make it.
“We kind of bonded together. The hardest thing was when I found out they passed away. These were mostly women that didn’t have much of chance. Some live and some don’t and that’s the saddest thing about it,” Hoyles said.
“Knock on wood, so far I have been lucky.”
RELATED
- CAMERON REPORT: Donna Howell’s family left feeling shortchanged, 10 years after breast cancer testing scandal
- CAMERON REPORT: Elizabeth Finlayson remembered by her daughters
- SPECIAL REPORT: The breast cancer testing scandal that shocked Newfoundland and Labrador led to sweeping change
- CAMERON REPORT: The breast cancer testing scandal in Newfoundland and Labrador affected many lives, including those working in the system that failed patients