The statistics are startling. Pancreatic cancer is the fourth leading cause of cancer deaths in the United States. More than 33,000 Americans are diagnosed with the disease each year with a 94% mortality rate after five years. It is the lowest funded of the top five cancers by mortality rate receiving just one percent of the National Cancer Institute’s $4.825 billion dollar budget in 2005. It is more common in Ashkenazi Jews and African Americans than in any other race.

Bobbie Ring has first hand knowledge of this devastating disease. She lost her husband Fred to pancreatic cancer in 2004. Her brother-in-law Steve Newmark died of the disease five years earlier. She has also lost neighbors and a cousin in Boston to the disease. Today she is fighting back with her participation in the Pancreatic Cancer Action Network (PanCAN).

“It is about educating the public, politicians, patients and doctors,” Ring said. “Ultimately it is about raising money to fund research for early detection, prevention programs and treatments.”

Susan Dertke Hendin’s father died of pancreatic cancer six weeks after being diagnosed. Her father-in-law had died of the disease 13 years earlier. Dertke Hendin was angered when she realized no significant advances had occurred concerning the disease in those 13 years despite improvements in medications, protocols and early detection for other cancers.

“I am baffled why we are not focusing on this,” Dertke Hendin said. “I am not willing to throw up my hands and say there is nothing more we can do.”

PanCAN was started in 1999 by Julie Fleshman whose father died of the disease. The national organization provides three programs: funding of research grants and public policy issues, patient and liaison services (PALS) and public awareness and education (Team Hope). Since the organization is not aligned with any doctors or hospitals they are free to look for researchers willing to focus on the disease. They also have two lobbyists to help them secure funds from the federal government which provides the greatest amount of funding for cancer research. Once a year there is a trip to Congress to raise awareness.

The PALS program is a very unique service offered by the organization. It is a totally free service to support patients and their families. Each associate will talk as long as someone needs on every subject from up-to-date information on clinical trials to recommending doctors or grief counselors. Each time someone calls in they will speak with the same associate who has already established a relationship with the patient and knows their situation.

The St. Louis affiliate of the organization is a small but mighty group, said Dertke Hendin. They have channeled their sadness, frustration and anger into finding a cure. Recently the group participated in the 4th Annual HealthFest at the St. Louis Science Center.

“My goal is to put pancreatic cancer on the map this year in St. Louis,” Dertke Hendin said.

“Gwen’s” (names changed to protect privacy) husband “Tim” was a victim of pancreatic cancer though he is currently cancer free. Tim is quick to point out his story is not common and he was very lucky. The couple was on vacation out of the country when Tim complained of a “vague abdominal pain.” When they returned home the pain became so severe Tim had to leave work early for the first time in his life. Luckily his doctor took the right tests which showed elevated levels of pancreatic enzymes.

“You have to remember the way I presented was very abnormal,” Tim said. “It is most common that once you’re showing the symptoms, it’s too late.”

Rather than dismiss the test results as something more common like pancreatitis, Tim’s doctor ordered a MRI and found the tumor. Within two weeks of his diagnosis Tim had the Whipple surgical procedure which was first developed in the 1930’s. The operation removes parts of the pancreas, small intestine, the common bile duct, the gallbladder and sometimes a portion of the stomach.

Despite the high mortality, Dertke Hendin is quick to point out there is hope on the horizon.

“The survival rate increases with early detection,” Dertke Hendin said. “We need to raise money and awareness just like what has been done for breast cancer, colon cancer and ovarian cancer. Some of those diseases have gained visibility because of celebrities, or their friends or family, who have battled those diseases. We need a celebrity endorsement to help us with our fundraising.”

One opportunity for the public to participate in fund raising efforts will take place on Thursday, Nov. 30 at 7:30 p.m. at the Sheldon Concert Hall. Jazz vocalist Denise Thimes will be celebrating the music of Phyllis Hyman at the second annual Mildred Thimes Foundation special fall benefit concert. The Mildred Thimes Foundation supports pancreatic cancer research. Part of the proceeds from the concert will also benefit PanCAN. Tickets are available by calling 314-534-1111.

For more information on PanCAN or to speak to an associate of PALS, call toll free 877-272-6226 or e-mail to [email protected].