Pancreatic cancer killed William Schunk. Now scientists are using his body to fight back.
Within about an hour of his death, researchers at the University of Nebraska Medical Center began collecting the Omaha veteran's organs as part of a unique "rapid autopsy" program. The goal: To create a library of tissue that could finally point scientists to new ways to diagnose and treat this most lethal of cancers.
"It probably should be called 'rapid organ donation,'" says Dr. Aaron Sasson, a pancreatic cancer surgeon who volunteers his time to help perform the autopsies. "These patients are really donating their bodies and organs to science."
Organs in the chest and abdomen are meticulously photographed, sliced and flash-frozen before genetic evidence starts to degrade. So are samples of skin, muscle, nerves, lymph nodes, blood and urine.
This tissue — 16,000 samples collected from Schunk and 10 others so far — holds vital clues to what causes pancreatic cancer, and what makes it march so aggressively through the body.
Only way to find clues
A fast autopsy is the only way to get at those clues. Pancreatic cancer is grimly different from breast cancer, for example, where surgically removed tumors are plentiful for research that can lead to new treatments.
Pancreatic cancer seldom is discovered in time to even attempt surgery. Not only is that devastating news for patients, it means frustration in the quest to improve the disease's bleak outcome.
"There isn't any tissue available, ever, for the researchers to study," says cancer professor Michael A. Hollingsworth, who runs Nebraska's rapid-autopsy program. "It's filling a special niche, I think."
"Patients and their families are amazing, that they realize the importance of trying to do this," adds Christine Iacobuzio-Donahue, a pathologist at Baltimore's Johns Hopkins University, who runs a smaller rapid-autopsy program.
Some 33,700 Americans will be diagnosed with pancreatic cancer this year, and 32,300 will die.
There is no early-detection test; early symptoms are vague complaints like indigestion. By the time the classic jaundice, or yellowing skin, and itching appears, the cancer usually has spread. Once that happens, patients typically have only months left to live.
Lack of early diagnosis explains only part of pancreatic cancer's lethality. Overall, less than 5 percent of patients live five years. But even when patients are caught early enough for the arduous surgery — removing parts of the pancreas, stomach, intestines and other organs — just 16 percent will survive that long.
Rapid autopsies have been used in other diseases, such as Alzheimer's and prostate cancer. But the Nebraska and Hopkins programs are generating intense new interest — because they answer an urgent call from a 2001 National Cancer Institute review for tissue banks to help overcome a dearth of research into pancreatic cancer.
One of the biggest questions: Why do some patients die with huge pancreatic tumors while others have tiny ones that prove equally as lethal by seeding themselves throughout the body?
Nebraska's program is the most comprehensive, and most strict, requiring autopsy within two hours of death. Patients may die at home, or the program may pay for them to spend their final days in a hospice. An 18-member team of doctors, pathologists, medical students and scientists is on standby, ready to preserve not just cancer-riddled tissue but top-to-bottom samples that make up a library open to international researchers.
At Hopkins, Iacobuzio-Donahue has collected autopsy samples from 45 patients, but culls far fewer from each person, focusing more on the initial tumor and sites where it has spread. She will accept autopsies within six hours of death — and, unlike in Nebraska, arranges for out-of-state patients to have autopsies performed by their hometown pathologists, who then ship the samples to her Baltimore lab.
Hard subject to broach
The autopsy costs families nothing and doesn't interfere with normal funeral arrangements. Still, recruiting participants is a balancing act. Doctors don't want to deprive patients of hope, and gently broach the program for those who accept that they're terminally ill.
Schunk, a retired Air Force lieutenant colonel, had what Sasson calls a typical reaction. "He just said, 'If they can take anything that will help them identify a way to find this sooner, then I am 100 percent for it,'" recalls his daughter, Karen Sater.
Ardith Hopp of Unadilla, Neb., didn't wait to be asked. Her cancer was caught early enough for Sasson to operate in 2001, and she still feels good despite battling back a recurrence a year ago. But not knowing she'd fare so well, she signed up for the program shortly after surgery, a decision she hasn't second-guessed.
"I'm not afraid of dying. It's going to happen to everybody," says Hopp, 62. "If there's something there they can use, I'm not going to need it anymore."