JACKSONVILLE, Fla. (AP) — Two years ago Patrick McLaughlin of Jacksonville was in the Mayo Clinic for minor nasal surgery.
But routine preparatory tests turned up something potentially far worse.
A lesion on his pancreas led to a diagnosis of pancreatic cancer, which kills 85 percent of people who get that news within six months.
"It is one of the worst cancers one can have," said McLaughlin, now 66. "Usually the diagnosis is late. The later it is, the more likelihood you are going to perish. . There are not a lot of people (survivors) running around."
After surgery, chemotherapy and radiation treatment, he is one of the ones still running around. So he decided to support other people who get the same devastating diagnosis by helping found a Jacksonville-based nonprofit, the Florida Pancreas Cancer Coalition Inc., to raise funds for Florida-based pancreatic cancer research.
"I did a lot of soul-searching," he said. "I can speak for people who can't speak for themselves."
After his diagnosis at Mayo, McLaughlin underwent a major, 10-hour operation called the Whipple procedure that calls for the removal of parts of the pancreas, stomach, small intestine and common bile duct, as well as the gallbladder and some nearby lymph nodes.
He was in the hospital six days, followed by about six months of chemotherapy and radiation. He still has some gastrointestinal side effects and is participating in clinical trials at Duke Cancer Institute in North Carolina. How many more years he has is anyone's guess.
"It's a tricky disease," he said. "No one really knows. . I just go on."
So McLaughlin, an administrative law judge for the Social Security Administration with retirement on the horizon, just keeps living.
He was on the golf course two weeks after surgery and now plays 18 holes of golf — without a cart — as often as he can. He and wife, Julie, traveled all the way to Michigan for Christmas to visit their son.
"I feel good," he said. "I've done about as well as can be expected."
In the early months of the new year, the fledgling, all-volunteer coalition will have his attention.
The overall goal is to support local research "where our local neighbors can feel that they are part of the team and actually see and experience where their money is going and what it is accomplishing," according to the website. The group plans to have periodic meetings with patients, their families and friends to discuss common issues.
McLaughlin and other board members are planning their first major fundraiser in March, the Culhane's Celtic Open golf tournament.
Since the coalition has not yet received official nonprofit status from the IRS, the event will be presented by a partner organization, the Northeast Florida Scottish Games and Festival, with another supporter, Culhane's Irish Pub in Atlantic Beach, as the title sponsor.
All proceeds will go to pancreatic cancer research at Mayo.
Mayo has not sponsored or endorsed the coalition but is "grateful that they want to raise funds for Mayo Clinic for pancreatic cancer research," said clinic spokesman Paul Scotti.
McLaughlin said there is enough "world-class research going on" statewide for Florida-focused fundraising. But he fretted that only 2 percent of the National Cancer Institute's budget goes to pancreatic cancer research, despite the high fatality odds.
Howard Crawford, an associate professor of cancer biology who is on Mayo's research faculty, explained why.
"From a scientific perspective, it's a very difficult organ to study," Crawford said. "We can't image it easily due to its location. Biochemically, it makes all of our digestive enzymes, making it tough to study proteins and DNA from patient samples. It's simply more challenging that most other cancers."
Also at play are the numbers.
"There are not as many researchers working on pancreatic cancer. A bit of a self-fulfilling prophecy, since fewer dollars means fewer people are attracted to compete for those dollars," he said.
In addition, the disease "affects relatively few people, about 45,000 a year, and very few people survive," he said.
"There are relatively few advocates compared to, say, breast cancer. Advocates' voices make a big difference."
Information from: The (Jacksonville) Florida Times-Union, http://www.jacksonville.com