Lynne FitzGerald hadn't even hit her 55th birthday when she was diagnosed with colorectal cancer. It was devastating news. A single mom with stage four cancer (meaning the cancer had spread from her colon and multiple tumours now riddled her liver) she was given a year to live.
"My life had just been turned upside down," says FitzGerald. Unable to work through debilitating rounds of chemo and recovery from surgery, FitzGerald was forced to cash in her RRSPs and ended up on welfare. Four years later, she has beaten back the cancer and is now surviving on a disability pension and hoping to return to work. Even with all the pain and heartache associated with her story, she still says she's one of the lucky ones. "I was a no-hoper and I'm still alive."
Last year, nearly 2,000 people in Nova Scotia were diagnosed with colorectal cancer: it killed 815. Colorectal cancer is second only to lung cancer as the most fatal cancer in Canada. Rates in Atlantic Canada are higher than the rest of the country. This part of the world has nine per cent of the annual cases of colorectal cancer, among only a little more than seven per cent of the population. Rates in Newfoundland and Labrador are particularly worrisome, being significantly higher than the national average.
Colorectal cancer is slow-growing, and there are often few symptoms. If caught early, it is one of the few cancers considered curable. At its later stages, it is tough to beat. A Health Canada study shows two-year survival rates above 90 per cent when caught at the first and second stages. At stage four, rates drop below 30 per cent.
It's those statistics that have led to much of the ongoing effort to promote screening. FitzGerald's surgeon told her the cancer had probably been in her colon for up to 10 years. Early screening would likely have caught it. Like regular pap tests and mammograms, the Canadian Cancer Society recommends regular screening for colorectal cancer. It claims there is convincing evidence the death rate can be reduced dramatically by such a program, predicting a 17 per cent reduction in colorectal cancer deaths if 70 per cent of people aged 50 to 74 were regularly screened.
"You can go to your doctor and get what's called a fecal occult blood test and be screened," says Erika Nicholson, manager of the Colorectal Cancer Prevention Program with Cancer Care Nova Scotia. "The challenge is that that's not happening, and people who are at average risk are not being screened."
Risk for colorectal cancer is calculated at two levels. Those at high risk are people who have a history of colon cancer or an immediate relative with a history of colon cancer. Anyone with inflammatory bowel disease or some inherited syndrome is also at high risk. Everyone in this category is probably already being watched by family doctors and offered colonoscopies when appropriate. The rest of the general population is considered at average risk.
A few provinces, Alberta, and Ontario included, have recently implemented screening programs. Nova Scotia is poised to be the first Atlantic province to offer screening. A pilot project is underway and the province hopes to be offering screening to the general public within a year. The $3-million program will offer testing to all Nova Scotians between 50 and 74 every two years.
The Nova Scotia screening tests will not be offered through family doctors; instead, they will be mailed directly to homes. Participants will be asked to take their own stool sample and smear a portion onto a provided card. They will then mail the test directly to the lab in a biohazard envelope. "We want to make it as easy as possible for people to participate," says Nicholson. She says a number of studies and surveys showed this was the best way to approach mass screening. "People like that this is not a blood test. People like that they could do this in their own home."
The test looks for blood in the stool. If evidence is found of a problem, the patient goes for a colonoscopy, a procedure in which a long, flexible tube with a camera at the end is used to look inside the colon. The technicians look for tumours, or, in the early stages, for abnormal tissue growth called polyps that may turn into cancer. "If you remove the polyp before it even becomes cancerous, and that's done through the colonoscopy, you prevent the cancer in the first place," says Barry Stein, president of the Colorectal Association of Canada and America. Stein is a stage-four colorectal cancer survivor. Not all polyps will become cancerous, but doctors have no way of knowing which ones potentially may have until they have been removed. "That's why we say it's really the only cancer you can prevent before it even becomes cancer."
>Currently Nova Scotia is the only Atlantic Canadian province with a screening program getting underway, though the other provinces are looking at establishing their own programs. It is work Ann Marie Kerr is happy to see being done, but wishes it would happen faster. The cancer-survivor-turned-activist says a screening program could have saved her a lot of pain. Four years ago, at age 55, she was diagnosed with stage-four colon cancer. "There's really no need of anyone dying from colorectal cancer," says Kerr, a Saint John, NB, resident. "If it's caught early, it's almost completely curable."
When Kerr began to look for the best surgeons to treat her advanced cancer, she found world-class care right here in Atlantic Canada. Her liver surgeon, Halifax's Dr. Geoff Porter, was recommended as one of the finest anywhere.
That level of care is the subject of the Cancer Outcomes Research Program in Nova Scotia. The $1.5 million population-based study, using data that has already been collected, is looking at the spectrum of colorectal cancer care, from early symptoms through to palliative care. "We're trying to find those areas where we need improvement," says project co-ordinator Robin Urquhart. She says problems can arise when a patient moves through the system from family doctor to surgeon, and then to the cancer clinic.
If the data say that many people, in the last month of life, are going to emergency for care, "then we would say, based on the literature, that that might be an indicator of poor quality." Once the 25-member team has analyzed the data and identified areas that can be improved, the findings will go to the provincial department of health.
Once complete, the work will apply to other cancers, but for now, since research shows colon cancer survival rates can be improved by access to timely medical services, the study is focusing on colorectal care.
While rates of colorectal cancer in Atlantic Canada are high, it is Newfoundland that is most affected. Rates are 27 per cent higher than the national average. Researchers at Memorial University in St. John's are hoping to discover why those rates are so high, and, in particular, why there are so many families in the province with multiple cases of colorectal cancer. More than 30 researchers in two provinces from a variety of fields, from medicine to genetics to nutrition, are engaged in the work. A team in Ontario will compare results with the team in Newfoundland. To date, data from 750 colorectal cancer patients have been collected and is being analyzed.
Taking a close look at the genes of those Newfoundlanders is the job of genetics professor Dr. Michael Woods. He's trying to identify a genetic mutation responsible for the high numbers of hereditary colorectal cancer in the province. Causes have been identified, but Woods says that since they don't explain many of the cases found in Newfoundland families, there are still more genetic mutations to be found. "We're narrowing it down, but we haven't pinpointed where the gene is yet. It's quite tricky because colorectal cancer can be caused by a number of different things," he says. "If you have a large family, just because a number of people have colorectal cancer doesn't mean it's all caused by genetics. It happens in the general population quite frequently, too, and there could be large environmental effects like someone's diet and things like that, which make it a bit more difficult to assess what the hereditary components are."
All of this is work Lynne FitzGerald hopes will keep others from going through what she did. FitzGerald went so far as to say goodbye to all her friends, fully expecting to die before her year was out. "The fear was terrible," she says, crying as she remembers the pain and heartache. "It was terrible. It was all because there was no testing. I go every year for a pap smear. I go every year for a mammogram, faithfully. If there had been a test for colon cancer, I would have gone for that every year, too, and I wouldn't have ended up in the mess that I ended up in."