A nun affected by the review of cancer tests at a New Brunswick hospital says patients and the public should have been notified when questions about the pathology results first arose.
"With cancer every minute counts. The luxury wasn't there to wait a year, a year-and-a-half before this. I know things were being done, but patients, I think, had the right to know because they themselves, and the public also, could have moved this along a little sooner," said cancer patient Sister Kathleen Waters, whose tests are among the nearly 24,000 cases from 1995 to 2007 under review in an Ottawa lab.
"So that was my concern, my major concern. Why not sooner?"
The nun from Rogersville chose to go public with her story after testifying in camera Tuesday at the inquiry into the work performed by former pathologist Dr. Rajgopal Menon, who was suspended from the Miramichi Regional Health Authority in February 2007 following complaints about incomplete diagnoses and delayed lab results.
An independent audit of 227 cases of breast and prostate biopsies from 2004 to 2005 found that 18 per cent of the cases had incomplete results and three per cent had been misdiagnosed. These results prompted Health Minister Mike Murphy to launch an inquiry into the matter.
Waters, who was diagnosed with breast cancer by Menon in 2006, said she learned about the problems at the hospital through media reports in 2007, and called the Miramichi Regional Hospital to request her results be reviewed. The hospital complied, but Waters said she felt the onus was really on patients to determine what was going on.
She said being able to speak with a patient advocate may have helped her at the time.
"There was no one I really knew to turn to to say, 'Hey, help me out here. I'm getting confused'," she said. "So, I had to do a lot of it myself, and it was nerve-wracking."
She also suggested the province spend more money to bring pathology students to the province and invest in high-tech pathology labs in each region.
Waters said she hoped the inquiry would pave the way to a system that is more open and accountable.
"It is in everyone's interest — doctors, CEOs, judges, lawyers, registrars, health ministers, journalists, stenographers and nuns — to get this right. Because though we may each be coming at this from a different vantage point or bias we are ultimately the same as far as our shared status as potential cancer patients," she said.
Patients share stories of anxiety
Other patients also told stories of anxiety over their test results in camera Tuesday. Women who had invasive surgeries, including colon operations and the removal of the uterus and an ovary, said they wondered if the procedures were really necessary. Many of the women testified that they had lost confidence in the health-care system and face constant anxiety.
Another woman told of waiting months for biopsy results after her breast was removed. She said when the results finally came back they were incomplete and the delay altered the kind of treatment she received and may have affected her long-term prognosis.
On Monday, the first day of patient testimony, another patient who opted to go public spoke out, telling media that waiting for his results caused him anxiety and makes it difficult for him to sleep. John Gay said the experience had shaken his faith in the health-care system, but he hoped the inquiry would help improve care at the hospital.
That same day, a 66-year-old man testified in camera that two consecutive tests for prostate cancer came back negative, but cancer cells were found in the biopsies when they were reviewed. He said he could have avoided uncomfortable hormone and radiation treatments had he received a correct diagnosis earlier.
Health Minister Mike Murphy and Marc Antoine Chiasson, principal counsel at the inquiry, have both said while the patient testimony is emotional, it is important for the inquiry to learn of the effects of the problem in order to make better recommendations.
During the first phase of the inquiry, in Moncton in May, Menon apologized to the patients, but said he was not aware of any errors in his work and takes "practically zero" responsibility for any incomplete or misdiagnosed results.
The inquiry will run until June 24 in Miramichi. It will return to Moncton for four final weeks of hearings in September.
The inquiry will not assign any criminal responsibility for the misdiagnoses.
Justice Paul Creaghan is expected to make recommendations to the government by Jan. 1.