When Jeopardy host Alex Trebek announced in March that he had been diagnosed with pancreatic cancer, more than a few national media outlets reported that there is no way to screen for this type of cancer. It’s a misconception that has trickled down to the general public, including to Vince Scott, whose mother died of the disease in 2015.
Scott, 59, had a fatalistic attitude about his likelihood of developing pancreatic cancer. He knew he was at increased risk due to his mother’s diagnosis and an inherited genetic mutation that ups the likelihood of him developing both malignant melanoma and pancreatic cancer. There is widespread awareness that melanoma can be screened for, and Scott has been screened regularly by a dermatologist since he had his first melanoma removed when he was 22.
But he was dubious when his dermatologist told him that it’s possible to screen for pancreatic cancer. Early detection can result in significantly better outcomes for a cancer that is typically diagnosed at an advanced stage when the disease doesn’t respond well to treatment. “I always thought there was nothing you could do,” says Scott, who lives in Lynnwood and works as a site manager for a construction company. “Knowing about something you can’t change had no appeal for me. If you can’t do anything about it, who wants to know how they’re going to die?”
But the turning point came last year when Scott finally bowed to the repeated urgings of his dermatologist, who had persuaded him to see a genetic counselor. The genetic counselor confirmed what his dermatologist had been saying: There is, in fact, a way to screen people at greater risk of developing pancreatic cancer.
She referred him to Dr. Teri Brentnall, who had developed it.
Dr. Brentnall is a gastrointestinal specialist at Seattle Cancer Care Alliance (SCCA) who helps direct the Gastrointestinal Cancer Prevention Clinic. She was a gastrointestinal fellow at UW Medicine in the 1990s when she consulted with a patient from Alaska who was part of “Family X,” which had weathered multiple cases of pancreatic cancer. She understood from the family that CT scans hadn’t been effective at detecting early-stage cancer in their relatives. Dr. Brentnall decided to try different screening methods, using MRI and endoscopic ultrasound, on one of the family members. His endoscopic ultrasound proved abnormal, which prompted other family members to ask Dr. Brentnall for the same screens.
“We were able to figure out which family members were in trouble,” she says. Typically, patients with pancreatic cancer are diagnosed only once a tumor is the size of a nickel or larger, in which case life expectancy is low. Symptoms include abdominal pain, weight loss and diarrhea; smokers and people with diabetes are at higher risk, as are people with two or more close relatives who have developed the disease. It’s these high-risk people that Dr. Brentnall seeks to screen.
Over time, she got better and better at figuring out what pancreatic cancer looks like in its earliest stages. “More and more people came to see us because we were the first in the world to offer screening. I kind of built my career on it.”
Not everyone was supportive, however. Dr. Brentnall offered patients with “pre-cancer” a pancreatectomy, removing their pancreas to prevent progression to cancer. Other specialists felt the decision to remove a pre-cancerous organ was too radical; they advocated for waiting for a mass to appear. For many years, her work was controversial. “It was both the boon and bane of my career.”
Over time, as other institutions set up similar surveillance programs, Dr. Brentnall’s approach became more mainstream. There are now close to two dozen screening programs in the U.S., and international programs in Canada, Japan and Europe too. “They began to see it was too late once a mass appeared,” she says. “Once other people started doing surveillance, they started to realize there are incredibly high stakes.”
Subsequent research over the last decade has shown that pancreatic cancer surveillance in high-risk people is cost-effective, detects cancer at an earlier stage and significantly improves survival.
But surveillance is not simple. Endoscopic ultrasound, which is primarily used for pancreatic screening at SCCA, is a subjective test. “The changes are pretty subtle,” she says. “People can be famous GI doctors and they can disagree about what an endoscopic ultrasound shows. It’s like looking at tea leaves in a cup of tea. You see fuzzy images and you have to decide whether they make a pattern and what that pattern suggests. You have to know exactly what you’re doing.”
Fortunately, Dr. Brentnall found a colleague who fits that description in Dr. Mike Saunders, who is clinical faculty at SCCA and director of endoscopy in the Division of Gastroenterology at UW Medicine.
Dr. Saunders has been performing endoscopic ultrasounds since the late 1990s, working in tandem with Dr. Brentnall to follow between hundreds of patients at high risk of developing pancreatic cancer. The screenings have led to findings such as a cyst or a very small mass in about 25% of patients, cancer diagnoses in less than five patients and pre-cancer in about 20 patients. “Ideally, we pick up pre-cancer, not cancer,” he says. “We have developed this as we go along because there previously have been no guidelines to tell us what to do.”
Pancreatic imaging is the most challenging type of endoscopic ultrasound to interpret, says Dr. Saunders. It takes about 30 minutes to perform and is usually done under sedation. Dr. Saunders does about three a week; he says physicians need to perform at least 200 to become skilled at detecting findings that warrant follow-up.
On a recent afternoon, he prepared to supervise as Dr. Joseph Roberts, a therapeutic endoscopy fellow at UW Medicine, performed the procedure on Scott. Dr. Saunders pointed out Scott’s liver and gall bladder as the scope snaked its way toward his pancreas. A video screen reflected what the tiny camera inside Scott was observing: lots of bubbles and dusky pink tissue, nothing out of the ordinary.
Within half an hour after the procedure had ended, Dr. Saunders approached Scott’s bedside in the recovery area. “No masses, no cysts – everything looked completely normal,” he told Scott, who cracked a smile.
Scott says he plans to return annually for screenings, as Drs. Brentall and Saunders recommend. After years of skepticism and foot-dragging, he’s reassured to know that there’s something he can do to try to prevent pancreatic cancer from taking root. He plans to talk up the screening to his brother and sister as well.
“I don’t know what I’ll die of,” said Scott, “but hopefully not this.”