November is Pancreatic Cancer Awareness month. Often, awareness brings enlightenment. In this case, awareness can bring despair.

"Until someone close to them is diagnosed, most people don''t understand what a poor job we do of fighting the disease," said Dr. David Linehan, a surgeon at the Center for Advanced Medicine at Barnes-Jewish Hospital.

Among the inescapable facts about the disease are the following, according to the Pancreatic Cancer Action Network:

• Pancreatic cancer has the No. 1 fatality rate of all cancers.
• It is the No. 4 cancer killer in the United States.
• It has a 99 percent mortality rate.
• Only 4 percent of patients will survive beyond 5 years.
• The average life expectancy after diagnosis if the cancer has spread beyond the pancreas is three to six months.

Out of these gloomy statistics, though, hope is beginning to emerge, as survivors and advocacy groups gather strength. The few who beat the odds are beginning to tell their stories. One of them is Richard Luze, assistant vice chancellor for alumni and development programs at Washington University.

Luze, 62, was diagnosed in April 2002. He was lucky, because in the early stages, the tumor blocked a bile duct, which made jaundice appear. Detection took awhile, though, because doctors assumed the jaundice came from eating raw oysters on a trip to New Orleans the previous month.

"My doctor didn''t want me to go to the Internet. He didn''t want me to be aware of how dismal it was," Luze said. "But he knew I''d do it anyway. It was very frightening."

Doctors at Barnes-Jewish discovered the cancer relatively early, in Stage II, which made Luze a candidate for the Whipple procedure. A patient''s best chance for survival, the operation involves removing the head of the pancreas, the gallbladder, bile duct and part of the small intestine.

"When my doctor explained the Whipple procedure," Luze said, "I wondered if I could survive that, much less the treatment that would follow."

The operation, however, is an option for only about 15 percent of patients, based on the size and position of the tumor.

"The one advance is that we can do the operation safely," Linehan said. "It''s an important advance, but in the grand scheme it''s not, because so few patients are candidates."

A month after Linehan performed Luze''s surgery, the Siteman Cancer Center at Barnes-Jewish got approval for a clinical trial for patients who had undergone the Whipple procedure. The trial involved an extremely aggressive course of treatment that included four weeks of radiation administered at the same time as a combination of three chemotherapy drugs. After a month of rest, Luze underwent four weeks of less aggressive chemotherapy. More than two years after completing the chemotherapy, he undergoes blood tests every three months and a CT scan once a year.

Luze''s sense of being overwhelmed at the diagnosis and treatment options is universal to those stricken with pancreatic cancer. Linehan noted that at a facility as large as Siteman, patients who live up to 200 miles away receive treatment five times a week.

"We put them through a huge operation, then hit them with massive doses of aggressive treatments and expect them to live through it with daily commutes," Linehan said. "We need to help them through this tough process."

Enter PALS, the Patient and Liaison Services offered by the Pancreatic Cancer Action Network, PanCAN for short. Patients are assigned a volunteer to help them from diagnosis through treatment.

"PALS can provide support in so many ways," said Laurie Berwald, PALS volunteer coordinator in St. Louis. Among its services are providing information about nutrition, treatment options and clinical trials. "They offer support and can help you work your way through the system."

Patient support is the gentle side of PanCAN. Its tough side is advocacy, which usually is left to the spouses and children of the victims, lobbying Congress and the National Cancer Institute for increased funding for research.

"A big part of advocacy comes from survivors, and there aren''t many survivors," Linehan said. "That makes the progress slower for pancreatic cancer."

PanCAN has to play catch-up for funding. The group estimates that the National Cancer Institute spent $36.5 million on pancreatic cancer research in 2003. The total sounds impressive, until you realize that the figure was just eight-tenths of 1 percent of the NCI''s $4.59 billion budget.

Luze was diagnosed too long ago to receive help from PALS, though he has taken his first few steps toward advocacy. He has started to counsel with a cancer support group at his church, United Methodist in Manchester, and has been a speaker on cancer panels.

His most meaningful encounter through his cancer experience occurred at a recent speaking engagement, where he met a woman whose husband had died of pancreatic cancer. She found his thoughts comforting, then asked if he recognized the purple pin she was wearing and what it represented.

"I told her I knew it was for pancreatic cancer awareness," Luze said. "She said she had worn it in her husband''s honor, but had been looking for the right person to give it to. She handed it to me. And I''ve worn it every day since then."

Diagnosing pancreatic cancer

Early diagnosis is difficult because the symptoms mimic those of so many other diseases. Among the symptoms are the following:

• Jaundice, yellowing of the skin and whites of the eyes.
• Pain in the upper or middle abdomen and back.
• Loss of appetite.
• Unexplained weight loss.

Even if all the symptoms appear, the cancer is hard to detect because the pancreas is hidden behind other organs -- the stomach, small intestine, liver, gallbladder, spleen and bile ducts.

For more information: To learn more about clinical trials or become part of the PALS network, visit www.pancan.org or call 1-877-272-6226.