Beverly's Story

Catching Pancreatic Cancer Early to Rewrite Her Story

Annual screening at UH may detect pancreatic cancer sooner in patients with family history.

Beverly Leighton always assumed she would develop pancreatic cancer, like her mother and maternal grandfather. So she began building an arsenal of information to help her wage the inevitable battle, arming herself with genetic testing and screening for this stealthy disease.

Her research led the Pennsylvania woman to the CAPS5 (Cancer of the Pancreas Screening-5) Study at Johns Hopkins University. Only eight locations in the country – including the Case Comprehensive Cancer Center, of which University Hospitals is a founding member – are participating in this study to detect pancreatic abnormalities before any symptoms present in high-risk patients.

“I always kind of knew in the back of my mind that it wouldn’t be a matter of if I got cancer but when,” said the 56-year-old from Erie, Pa. “I learned about the CAPS5 study in a Johns Hopkins University newsletter, and there were only a handful of hospitals involved. As luck would have it, UH is one of them. I now had somebody looking out for me.”

Patients enrolled in the study provide samples of blood and pancreatic fluid during annual exams at UH. They also undergo endoscopic ultrasonography or an MRI that shows the pancreas in high-resolution. In 2017 and 2018, Beverly’s scans were clear. This year, gastroenterologist Amitabh Chak, MD, noted a suspicious change: a one-centimeter adenocarcinoma tucked in the tail end of her pancreas.

“This saved her life,” said Jordan Winter, MD, UH’s Chief of Surgical Oncology at UH Seidman Cancer Center and a national expert in pancreatic cancer, who performed a nearly nine-hour laparoscopic distal pancreatectomy to remove half of Beverly’s pancreas, plus her spleen and 14 lymph nodes. The cancer was Stage 1A.

“Only 5 percent of resected pancreatic cancers, and 1 percent of all pancreatic cancers are diagnosed at this early stage. If we could diagnose all pancreatic cancers at this stage, we would be able to have a game-changing impact on the outcome of this disease.”

Cancer of the pancreas, an organ that secretes enzymes that aid in digestion and hormones that help regulate the body’s metabolism of sugars, is particularly deadly because it is difficult to diagnose early. The number of cases in the United States has nearly doubled over the past two decades, largely due to an aging U.S. population, Dr. Winter said. Survival has only marginally improved, as this especially tricky cancer has not benefited from the types of novel treatment strategies that have increased survivability for other cancers, such as immunotherapy or precision medicine. Progress has resulted from oncologists’ ability to administer multiple chemotherapies simultaneously, Dr. Winter said.

“It is my sincere hope and expectation that the innovative science that is happening at the Case Comprehensive Cancer Center and elsewhere will change this story and will dramatically improve outcomes of this disease over the next 10 years,” Dr. Winter said. “Beverly was so smart to seek out Dr. Chak, as most patients with familial pancreatic cancer – 10 percent of all pancreatic cancer patients, or 5,000 cases per year – are not in screening protocols.”

Beverly found that she has a rare familial syndrome called Familial Atypical and Multiple Mole and Melanoma Syndrome (FAMMM), an inherited mutation in the CDKN2A (or p16) gene, which is involved in regulating cell division and predisposes the carrier to pancreatic cancer. Through exploring her genetic history, Beverly believes that pancreatic cancer may stretch even farther back than her maternal grandfather, who died at age 59 when she was only 12. Her mother was admitted directly to hospice after her diagnosis in 1998.

"Most family members from high-risk families will not develop pancreatic cancer, but proactive enrollment in a screening program helps ensure that those who develop cancer will have a chance for early detection and surgical resection," said Dr. Chak. 

Now the mother of three daughters wants her own children to be tested. Her eldest, who is 33 and lives in Massachusetts, is already scheduled for testing at Dana-Farber Cancer Institute in Boston.

“I feel I have a unique perspective: I was the daughter of a pancreatic cancer patient and now I am a pancreatic cancer patient who is the mother of daughters. I remember what it felt like to get this information. Having this knowledge and keeping on top of things helps us all,” says Beverly, who begins chemotherapy and radiation therapy soon near her home in Erie.

“I didn’t choose my genetics, but I’m hoping to change the narrative of my story.”

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