Josh Worley of Simpsonville was an active 33-year-old UPS driver when severe back pain sent him to the doctor.

Prescriptions worked for a while, but the pain just got worse. Finally, a CT scan revealed the source was a tumor on his pancreas. 

Tragically, by the time he was diagnosed, the cancer had spread to his liver, and just 19 months later the father of two was gone.

Unfortunately, as it was in Josh Worley’s case, pancreatic cancer often isn’t found until it’s advanced, making it difficult to treat.

That’s one of the reasons the survival rate is so low – only 11 percent of patients live five years after diagnosis, according to the American Cancer Society.

But 11 percent is nearly double the 5 percent survival rate of a decade ago, the society reports. 

And experts say there is reason to hope it will continue to improve.

Nationwide, more than 62,000 people will be diagnosed with pancreatic cancer in 2022, according to the cancer society, and nearly 50,000 are expected to die of the disease.

Risk factors include smoking, Type 2 diabetes, a family history of pancreatic cancer, chronic pancreatitis, obesity, and genetic mutations known as BRCA1 and BRCA2, which are associated with breast cancer, the society reports.

Symptoms can include weight loss, abdominal pain that may radiate to the back, jaundice, nausea, and vomiting, according to the ACS.

More than 1,100 South Carolinians are expected to be diagnosed with pancreatic cancer this year, said Greenville gastroenterologist Dr. Veeral Oza. But 65 percent of them generally won’t make it past the first year, he said.

“While not as common as lung cancer or colon cancer, it’s deadly,” he told Integrated Media, publisher of Greenville Business Magazine, Columbia Business Monthly and Charleston Business Magazine.

Pancreatic cancer is so difficult to diagnose and treat for several reasons, said Dr. A. Craig Lockhart, chief of hematology/oncology at the Medical University of South Carolina and associate director for clinical science at the Hollings Cancer Center.

To begin with, the symptoms – which include abdominal pain that can mimic indigestion – aren’t obvious, he said. 

“It’s not like breast cancer, where somebody finds a lump,” he said. “When they persist and are progressing and getting worse, then people start to have medical evaluations.”

The symptoms are so vague they are often discounted, said Oza. 

“Patients often don’t come to us until they’re in a significant amount of pain,” he said. “If you eat barbecue and have belly pain that lasts one or two days and goes away, fine. But if it lasts longer — beyond five or six or seven days — you should seek care.”

Also, there are no reliable screening tests for pancreatic cancer, so it can’t be found at early stages, like breast cancer with mammography, the doctors said. 

Plus, these cancers are tough to see through imaging until they get big enough, Lockhart said.

One test, endoscopic ultrasound to look at the pancreas, is only recommended for people at high risk, such as those with a family history, said Oza.

In addition, pancreatic tumors often form in an area interlaced with critical nerves and blood vessels, making them a challenge to remove surgically, Lockhart said.

“The only reliable way to cure pancreatic cancer is surgery … and less than 50 percent of patients … will ever have surgery. Around 25 percent really,” he said. “A tumor does not have to get very big before it cannot be removed safely.”

Pancreatic cancer is also resistant to standard therapies, he said. 

And it’s aggressive, Oza adds.

“Pancreatic cancer survival at five years after diagnosis, regardless of stage, was about 5 to 6 percent about a decade ago, which is not a high number,” he said. “Now it’s up to 11 percent, which is still pretty dismal. But compared to what it was, it has doubled. So we’re making progress.”

What accounts for that improvement? 

Treatments and technology have evolved over time, and there is greater awareness of pancreatic cancer, Oza said. 

For example, one treatment that looks “very promising” is immunotherapy, which flags the tumor cells as foreign and trains the immune system to attack them, he said.

Though still in trials, there have been encouraging outcomes in lung, liver, and kidney cancers with this therapy, he said, so there is reason to believe it could work in pancreatic cancer too. 

Meanwhile, a blood test is currently being studied that also looks promising for diagnosing pancreatic cancer early in high-risk people, the way CT scans are now used for people at high risk of lung cancer, Oza said. 

If the blood test is positive, the next step would be endoscopic ultrasound and biopsy, he said. 

“The kinks are being worked out,” he said. “But eventually … (we will have) this test or another test. But we’re still five to 10 years away from that point.”

Currently, the blood test costs about $1,000 and is not covered by insurance, he said, so the price tag for widespread testing would be prohibitive. 

“Once the price comes down, and it’s acceptable for insurance providers,” he said, “I can see it being offered to people who are smokers, who have a history of alcoholism, or a genetic or family history.”

It also might be offered to people 50 and older since it’s most commonly diagnosed among people in that age group, he said, though it can occur in younger people and rarely in those younger than 30.

There are also chemotherapy regimens that didn’t exist 10 to 15 years ago that can help shrink the tumor so surgery is more feasible, Lockhart said. 

And other drugs have been developed in the last decade that improve how well pancreatic cancer responds to treatment and reduce the likelihood of it recurring, he said. 

“The bar was very low as far as improving things. We had nowhere to go but up as far as survival goes,” Lockhart said. “But any little incremental thing helps.”

Still, both doctors are confident the survival rate will continue to improve. 

“The 11 percent number was just published in 2022. Last year, it was about 9.7 percent,” Oza said. “As time goes on, we will see the survival rate go up, mostly because of early diagnosis.”

“There is reason for hope,” said Lockhart. “There is a ton of research going on … and there are organizations like the Pancreatic Cancer Action Network (PanCAN) that are dedicated to supporting research as well as standard patient care. 

“And there is optimism that we’re going to find better ways to use the therapies we have as well as develop new therapies.”

Lockhart said he encourages patients to participate in research because clinical trials are often where the best medical care is delivered and they can offer access to drugs that haven’t yet made it to the market. 

“All the therapies we now take for granted were developed in clinical trials,” he said. “Nothing happens in cancer without clinical trials showing us that something promising is working.”

Worley says she’s thankful that so many researchers are working to solve the mysteries of pancreatic cancer.

“I’m grateful for the advances being made,” she said. “They weren’t in time to help Josh, but are there to help others who come behind him, and he would want that.”

Josh was diagnosed in 2009, she said. And in addition to his local oncologist, he saw a pioneering pancreatic cancer researcher in Arizona.

“Both gave Josh all they had to give him. And Josh gave it all he had to fight it,” she said. “It simply wasn’t enough.”

Because of the location of Josh’s tumor, it couldn’t be surgically removed, she said. And the cancer had spread by the time it was found. 

So he began chemotherapy, and for a while, he rallied. But the cancer began to grow again, she said. 

Though he was always game to try a new treatment, eventually nothing else worked. He was put on a morphine pump, which allowed him to spend the time he had left with his boys, then 11 and 15, coaching basketball, which they loved.

Her beloved son was hospitalized shortly after his 35th birthday, she said. 

“We knew the end was very near, and he wanted the boys to remember him as a happier person,” she said. “So he went to McCall Hospice House, where he … passed away 12 days after his 35th birthday.”

A former community representative for PanCAN, Worley said her family continues to follow developments around the disease, offer encouragement to patients, and raise awareness so that other young fathers with pancreatic cancer have the chance to see their children grow up. 

“Josh would have loved to have been a part of (his sons’) lives,” she said.

While grateful for the 19 months they had with him after his diagnosis “because many people don’t get that much time,” Worley said she’s happy the survival rate is increasing.

“It’s almost double what it was when we lost Josh in 2011,” said Worley. “I hope by the time I leave this world it will be much, much higher.”

To learn more, go to pancan.org.