Trying to raise the profile of pancreatic cancer, deadly yet lagging in research funding

Charles Yeo could hardly have been mistaken for a preacher, not with the white lab coat. But as the surgeon mingled among the crowd in a ground floor auditorium at Thomas Jefferson University Hospital, one could see why he referred to the mid-November gathering as "almost a religious experience."

It was the fifth annual Pancreatic Cancer symposium, a chance for survivors and those recently diagnosed to learn about the latest advances and - not least - to give each other moral support.

"It's an annual pilgrimage," said Yeo, chief of surgery at Jefferson and the area's leading practitioner of the Whipple procedure, the surgery that gives many patients the best chance of surviving the deadly disease. "It's just so powerful for someone six months post-op to see someone 15 months post-op."

After the presentations, Yeo, a tall man of 59, circulated among patients at the lunch that followed, offering words of encouragement. Stopping at the table of Annerose Langan, 76, of Abington, who was facing the surgery in less than a month, he asked if she was having second thoughts. No, she said. None at all.

For Yeo and his colleagues, the fight against pancreatic cancer does not begin and end in the operating room. Working with patients ranges from boosting their morale to subtle requests that they become advocates for pancreatic cancer research, which he says has long been underfunded.

Even with advances in surgical techniques, diagnosis, and drugs, he estimates that a patient operated on for stage two pancreatic cancer, where the disease has not spread to other body parts, may now have a five-year survival rate of 25 to 40 percent.

This is far better than the overall survivor rate of just 6 percent, which includes the majority of pancreatic cancers that are inoperable.

"It's not great but it's not zero," Yeo says. "We do have better drugs, but . . . they're not home-run drugs. We're better at diagnosing this, and more willing to take on challenges. It's not a death sentence anymore. We're optimists. We provide hope."

Apple founder and CEO Steve Jobs, among the most famous patients to undergo the Whipple, had a rare, less aggressive form of the disease. Diagnosed in 2003, he delayed surgery for nine months while he tried alternative remedies such as macrobiotic diets and spiritualism. After his death in 2011, his biographer, Walter Isaacson, said Jobs had regretted delaying the surgery.

Pancreatic cancer is now the fourth-leading cause of cancer deaths in the United States behind lung, breast, and colorectal cancers. And the advocacy group Pancreatic Cancer Action Network says it could reach No. 2 by 2020, with annual deaths doubling from the present 37,000 - due partly to an aging population and partly to rising survival rates for other cancers.

The most common symptoms - abdominal pain and jaundice, from blockage of the bile duct - tend not to occur until the disease is fairly advanced. And there are no reliable noninvasive tests such as mammography for breast cancer to give early warning.

Annerose Langan was one of the lucky ones. Her journey to Jefferson started with lower back pain due to osteoporosis. When an MRI and CT scan showed some abnormalities, her physician sent her to a general surgeon who correctly suspected that she had pancreatic cancer or was in a precancerous stage.

But he also told her she'd spend three weeks in the hospital from the operation and then would have a feeding tube and go to a rehabilitation facility for two to three weeks. "That didn't sound great to me," she said, sitting in her living room recently. She was considering not having surgery.

But the mother of a friend of her son Dan had had the Whipple from Yeo and was doing well, so she consulted him. He said the hospital stay would be less than half that and there would be no feeding tube or rehab center: She'd go right home. He thought she had about a 30 percent chance of having cancer.

"He said, 'So you want to live another 30 to 40 years?' " I said, 'Why not? I have a good life.' "

But he did not minimize the complexity of the Whipple procedure, named after surgeon Allen Whipple, who developed a refined version of it in 1935. It has since been much improved but remains an arduous procedure, lasting up to six hours and involving the removal of the head of the pancreas, the gallbladder, and portions of the duodenum and lower stomach.

A more recent procedure, the "mini-Whipple," allows preservation of the entire stomach. Yeo said he has done 1,169 Whipple procedures since his first in 1986, more than any surgeon in the country except his mentor at Johns Hopkins Hospital, John Cameron, and most are now the mini-Whipple.

For Yeo, pancreatic surgery was not an easy choice.

"The pancreas is referred to as the rattlesnake of the abdomen," he said, holding up a model in his office. "If you mess with it, it will come back to bite you." It poses the greatest danger of postoperative complications of any organ in the abdominal cavity, Yeo said. Also, "it's a gelatinous organ. It doesn't hold sutures well. You can cause pancreatitis, and that in itself can be a lethal disease."

Many cases are what Yeo and colleagues call "incidentalomas." They're spotted by tests for other conditions. That's how Annerose Langan found out.

Yeo and others in the battle with pancreatic cancer say they are handicapped by a lack of research dollars that could enhance early detection. According to the National Cancer Institute (NCI), the disease was funded at just under $100 million in fiscal 2011. In comparison, breast cancer research got $625 million, lung cancer $297 million, and colorectal cancer $265 million.

A new law - the Recalcitrant Cancer Research Act - requires the NCI to develop research plans for cancers with a five-year survival rate of less than 50 percent, with immediate attention to lung and pancreatic cancer.

At Jefferson, a key effort involves collecting patient tissue samples for a Pancreas Tumor Registry to study hereditary and environmental risk factors.

The field hasn't been inactive. An existing drug, Abraxane, a form of the cancer drug Taxol, was recently shown to help advanced pancreatic cancer patients live about two months longer than those on chemotherapy alone. And a 2011 study found that advanced patients lived even longer on Folfirinox, a combination of four generic drugs.

But the most promising area cited by Yeo and others is the search for "molecular beacons," genetic profiles that could help guide chemotherapy and radiation, which would be customized to each patient. They might also hold clues for early detection.

"We haven't really invested in this disease," Yeo told the symposium. "Its time has come."

Annerose Langan went home from the hospital in mid-December and says she is gaining strength and learning to adjust to eating several small meals a day, as Whipple patients must do. She remains optimistic about a full recovery.

"She will require no chemo and no radiation and would be considered surgically cured," Yeo wrote. "To be frank, we would love to [get] all patients at this stage!"