Local group joins fight against deadly pancreatic cancer

(Republished with permission from the St. Louis Post-Dispatch. This article originally ran in the Science & Medicine section on Wednesday, December 14, 2005)

By Deborah L. Shelton
St. Louis Post-Dispatch

When Gary Hackstadt was diagnosed with pancreatic cancer in January 2003, he was handed a death sentence.

Pancreatic cancer kills 99 percent of those who get it, almost all within six months of diagnosis. Hackstadt’s cancer already had spread beyond his pancreas by the time it was discovered.

Doctors gave him less than a year to live.

Almost three years later, Hackstadt, 57, of Okawville, Ill. is alive and well – one of relatively few to survive the deadly and little understood cancer.

Every year, about 32,000 people in the U.S. are diagnosed with pancreatic cancer. It is the fouth leading cause of death from cancer in the United States.

Yet, the amount of money spent on research per patient is among the lowest of the leading cancers.

Despite that, efforts are underway locally and nationally to improve the odds of survival for those with the disease.

Chesterfield resident Laurie Berwald is trying to raise awareness – and money for research. In May 2003, she started a local chapter of Pancreatic Cancer Action Network, or PanCAN, a national patient advocacy group.

“One of the problems with pancreatic cancer is that there aren’t many survivors to work with you,” said Berwald, whose father died of pancreatic cancer in December 2000, two months after being diagnosed. Her mother was diagnosed with the disease in August and is undergoing treatment.

“It was shocking, almost to the point that it was unbelievable, that both of my parents got it, ” Berwald said.

Pancreatic cancer is often called a silent disease because there are rarely early symptoms. By the time it’s discovered, it’s usually too late.

The pancreas is a flattened, oblong gland, part of the digestive system, located deep in the abdomen.

Doctors are not sure what causes pancreatic cancer. Possible risk factors include smoking, diabetes, obesity, increasing age, chronic pancreatitis, history of pancreatic cancer in a biological family member, and being African-American or an Ashkenazi Jew.

Funding research

The local PanCAN group has raised about $10,000 over the last two years for patient information kits and research grants. Some of the grant money has been awarded locally to researchers at Washington University School of Medicine and the Siteman Cancer Center at Barnes-Jewish Hospital, where researchers are trying to better understand the disease so they can design a screening test and develop a therapeutic vaccine.

The PanCAN grant money is appreciated because “funding is tight,” said researcher Dr. David Linehan, a liver, pancreas and gastrointestinal surgeon at Washington University School of Medicine and Barnes-Jewish.

One research effort involves analyzing blood taken from pancreatic patients before and after surgery to locate biomarkers that could be identified by a screening test. It would work much like the prostate-specific antigen test, which measures high levels of a protein suggestive of prostate cancer. A screening test could identify pancreas cancer early when treatment is still possible.

Another effort is directed at finding ways to trick the immune system into attacking the cancer as it would a foreign invader, such as a virus.

But the cancer’s high death rate has been a major obstacle in finding enough people to enroll in clinical trials.

“In my view, every patient with pancreatic cancer ought to enroll in a clinical trial,” Linehan said. “The therapies we have don’t work and unless you compare them to possible new therapies, there’ll never be progress.”

Survivor’s story

Hackstadt’s mother died 38 years ago of cancer that the family thinks originated in the pancreas. But like most people, Hackstadt knew little about pancreatic cancer before his diagnosis.

While it is too far advanced for surgery in 88 percent of patients, his cancer was caught early. He underwent a Whipple procedure, a complicated surgery that involves removing the head of the pancreas and the gallbladder, bile duct and parts of the stomach and small intestine. Surgery was followed by a clinical trial of radiation and chemotherapy.

The cancer returned to his liver a year later but was treated successfully. Hackstadt returns to Siteman Cancer Center for regular follow-up exams and blood tests.

Seeing Hackstadt at an appointment earlier this week prompted a wide smile and a hearty handshake from his physician, Dr. Benjamin Tan.

After a physical examination and a barrage of questions about pain, swelling, weight loss and other medical issues, Tan pronounced Hackstadt in good health.

“You’re a miracle!” Tan said, beaming.

PanCAN

To contact PanCAN, the Pancreatic Cancer Action Network:
1-877-272-6226
lberwald@pancan.org

Copyright 2005 St. Louis Post-Dispatch, Inc.