Back in the summer of 1996, Laurie Ellies was busy going about her daily life in rural Ontario. She was away on business when she got the kind of call no one ever wants. A family member told her to get straight home: her mom was in the hospital, and the news was bleak.

A few months prior to that heart-wrenching phone conversation, Ellies’s mother had complained of back pain. Doctors said her discomfort could be attributed to inactivity that comes with recovering from knee surgery. The active, nonsmoking 61-year-old was otherwise healthy. Ellies was blind-sided when she learned her mom had been diagnosed with pancreatic cancer.

“It was a complete shock,” Ellies says. “Three weeks later, she was gone. It still shakes me up to talk about it.”

What made the diagnosis all the more difficult to accept was that at the time there was little information available to people suffering from the illness or to those like Ellies, loved ones devastated by the swift course it typically takes.

Cancer of the pancreas might not be in the public eye as much as other types of the dreaded disease, but there’s no denying its stealth. It’s the fourth-leading cause of cancer deaths in men and women in Canada and the United States, according to the Pancreatic Cancer Society, which Ellies cofounded after her mom died. The society puts the fatality rate of the disease near 100 percent. The Canadian Cancer Society estimates that 3,900 new cases of pancreatic cancer will have occurred in 2009. An estimated 3,900 people will have died of the disease this year as well. Actor Patrick Swayze’s death this fall boosted the profile of the illness, which also killed Vanoc chair Jack Poole.

There are no early-detection tests for the disease, and many cases are asymptomatic. Consequently, situations like the one the Ellies family faced are common: once a diagnosis is finally made, most people find themselves with little time left.

“It’s known as the silent killer,” Ellies says.

Sylvia Ng, leader of the B.C. Cancer Agency’s pancreatic-cancer research net, says that when people first complain of symptoms, doctors commonly suspect a gastrointestinal disorder.

“Pancreatic cancer is usually diagnosed at a very late stage because the symptoms are usually very nonspecific,” Ng tells the Georgia Straight in a phone interview. “A patient goes to their GP, and pancreatic cancer is not necessarily the first thing a GP would think about.”

“It’s a very devastating disease,” she adds. “The survival after prognosis is pretty short, usually three to six months. And patients endure a lot. It’s really hard on families.”

The pancreas is a crucial gland that is about six inches long and lies deep in the upper abdomen behind the stomach. It aids in the digestion of food and the regulation of blood-sugar levels.

According to the B.C. Cancer Agency, signs of pancreatic cancer include pain in the upper abdomen or upper back, loss of appetite, unexplained weight loss, weakness, diarrhea or constipation, nausea and vomiting, the onset of Type 2 diabetes, jaundice, and the presence of pale, greasy, floating stool.

The causes of pancreatic cancer are unknown. About 80 percent of cases occur in people over age 60, but it can strike at any age. Black people and those with Ashkenazi Jewish heritage are more vulnerable to pancreatic cancer. Cigarette-smoking is thought to contribute to 20 to 30 percent of pancreatic cancers.

Risk factors include a high-fat diet, obesity, diabetes, pancreatitis, cirrhosis, and prior removal of the gallbladder. Up to 10 percent of cases of pancreatic cancer are hereditary. Alcohol and caffeine consumption have been studied but no clear link to pancreatic cancer has been found.

To reduce the risk of acquiring the disease, the B.C. Cancer Agency recommends quitting smoking, maintaining a healthy weight, and eating a low-fat diet with plenty of fruit and vegetables.

Diagnosis is made through a physical exam, stool samples, blood tests, abdominal ultrasound, computed tomography scan, magnetic-resonance imaging, or biopsy.

If caught early enough, before the cancer has spread to other organs, surgery can be done to remove the tumour. This is the only chance to cure pancreatic cancer. The five-year survival rate in these cases is 15 to 20 percent.

“Over the past five to 10 years, we have gotten to know more and more about pancreatic-cancer biology and genetics,” Ng notes. “Researchers in the U.S. and Canada are looking at”¦how we can diagnose earlier: that is the key. If we can diagnose early enough, then surgery is an option, and it could be curable.”

Other research is examining new combinations of drugs that will aim to “improve clinical outcomes, shrink tumours, and prolong survival”, Ng says.

Unfortunately, one of the reasons pancreatic cancer isn’t as well known as other types is because there are few survivors to champion the cause.

That’s why Ellies cofounded Pancreatic Cancer Canada along with her long-time family friend, Betty Aldridge, who lost her husband, former Toronto Argonaut Dick Aldridge, to the disease. Like Ellies’s mother, he was physically fit, watched his weight, and didn’t smoke or drink.

Ellies says the organization aims to provide information and support to people affected by the illness and raises funds for research, with early detection being a priority.

“We want to raise awareness of this lethal disease,” Ellies says. “We don’t have our loved ones to carry the torch, so we’re here to fight their fight.”