It started with a bad case of indigestion. Back in May 2012, Bill Rosvold, a 66-year-old construction project manager from Atlanta, checked into the ER after he started experiencing dry heaves. Four tests and five days later, he received his diagnosis: stage 2B pancreatic cancer. And though he’s since completed his cancer treatment, “it’s almost inevitable it will recur,” he says.
Pancreatic cancer, although it is only diagnosed in about 45,000 people in the United States per year, is one of the deadliest types of cancer. Only about six percent of patients live five years after their initial diagnosis, and it is the fourth leading cause of cancer-related death for men and women in the country, according to the American Cancer Society. The Pancreatic Cancer Action Network — where Rosvold met with other volunteers in New York City on June 6 — brought close to 700 people to Washington, DC on June 18 to raise awareness for the disease.
After his diagnosis, Rosvold had parts of his bile duct, duodenum, a quarter of his pancreas and a number of lymph nodes removed, followed by weeks of chemotherapy and radiation. Typically, treatment for the disease results in severe side effects, and often comes too late. With that in mind, should you get screened in advance?
That depends, says James D’Olimpio, an oncologist specializing in pancreatic cancer treatment at North Shore-LIJ, a hospital in Long Island. “It’s an individual decision,” he says. If a person has a family history of the disease, certain genetic mutations related to family history, or makes various lifestyle choices, he or she might opt to be tested. “All of those things can make a difference on whether screening can be effective,” D’Olimpio says. “But then the problem is now what do you do?” he says. “It’s a very, very nasty disease.”
Unlike breast or colon cancer, there are no regular screening guidelines recommended for pancreatic cancer. This means that physicians are not routinely testing for the disease in healthy people. That’s partially because the available screening methods are “not very effective,” D’Olimpio says.
The United States Preventive Services Task Force — a government-backed organization whose screening guidelines for diseases and chronic conditions are used in Medicare and Medicaid reimbursement criteria — published a statement in 2004 that advocated against routine testing for pancreatic cancer. They reasoned that the existing tests were invasive and not very accurate, and that the available treatment for late stages of the disease did not necessarily improve patient outcomes. It hasn’t been a priority to update the statement, largely because of the absence of any new research in screening or therapy, according to David Grossman, a physician and medical director at the organization.
Yet some recent research has made the case for screening certain patients with a family history of the disease. A 2011 study in The American Journal of Gastroenterology screened 109 patients with a family history of pancreatic cancer using magnetic resonance imaging (MRI) scans. Nine patients, 6 of them over 65 years of age, were found to have pancreas abnormalities that could lead to cancer. The authors of the study used their findings to suggest screening people over 65 with a family history of the disease, but cautioned that the results warranted further research.
Currently, there are a number of ways to test for pancreatic cancer. One way is through imaging, or tests that scan the body looking for abnormal growths on the pancreas. MRIs use radio waves and magnets, while computed tomography, or CT scans, take a cross-sectional x-ray of the body. In Rosvold’s case, he received an MRI and an x-ray along with an endoscopy, a procedure in which doctors insert a small tube through the mouth and into the small intestine via the esophagus to look for pancreatic tumors.
Another screening test, the positron emission tomography (PET) scan, uses a radioactive sugar injected in the blood to look for clusters of cancer cells (which absorb large amounts of radioactive sugar compared to regular cells). PET scans are able to detect very small tumors, but they cost around $5,000, says D’Olimpio. Plus you need to factor in the amount of radiation your body receives, as it is significant, he says.
Also available are blood tests that can look for biomarkers, substances in the blood that indicate whether or not a healthy person has pancreatic cancer, and how severe it is. “Blood is easier to access than the pancreas,” says Matthew Firpo, a pancreatic cancer researcher from the University of Utah. A common biomarker used in screening is CA 19-9 though up to this point, detecting pancreatic cancer via one biomarker hasn’t been that accurate. “We think it is going to take 10 to 50 different biomarkers,” says Firpo. His lab is assessing blood samples of people who have pancreatic cancer and those at risk to understand what substances in the blood are determinants of disease.
Should you get one?
Doctors don’t necessarily know whether they should test a patient for pancreatic cancer, because early stages of disease tend to be asymptomatic. Early stage cancers are usually discovered by accident, while patients with a later stage of disease may experience weight loss, jaundice, or depression. “Not every patient turns yellow in their eyes, but many lose weight,” says D’Olimpio. Depression too can be “a very important clue,” and a psychologist may order a pancreatic cancer screening test if a patient develops depression without prior history of it.
If a person exhibits certain risk factors, however, testing for the disease makes sense. People with two or more family members with pancreatic cancer, diabetics, those who consume larges amounts of alcohol, and smokers are at a higher risk. Age is also a consideration, as 71 percent of patients diagnosed with the disease are over the age of 65, according to the National Cancer Institute.
Even with a screening test, the prognosis with treatment is grim. About 10 percent of people, like Rosvold, develop tumors that are small and localized enough that they are eligible for a surgical procedure that extracts the affected areas from the body. Otherwise known as a Whipple, the invasive surgery removes parts of the pancreas, gallbladder, stomach, and small intestine. Post-operative complications are likely, and even after the cancer is cleared, there is a good chance it will recur. A Whipple “isn’t a curative procedure,” says D’Olimpio, though patients “tend to live about twice as long as those that don’t get it.”
Whipple or no Whipple, once patients are diagnosed, oncologists like D’Olimpio administer chemotherapy or a combination of chemotherapy and radiation in an attempt to help manage the disease. “Our goals are very modest,” he says. “We can get patients who live 2 or 3 or 4 years” longer he says. “Many patients will choose treatment,” even if it only offers palliative benefits.
Finding pancreatic cancer early doesn’t necessarily mean patients will live longer. “Does early detection actually make a difference?” asks D’Olimpio. “The answer is no.” Five-year survival rates for pancreatic cancer — or the percentage of patients who live at least five years after their cancer is diagnosed — are the lowest overall among 18 commonly diagnosed cancers, according to the American Cancer Society. Stage one cancer, or when the cancer is restricted to the pancreas, has five-year survival rates up to 14 percent for people with endocrine pancreatic tumors (the more common form of the disease). But by the time the cancer has progressed to stage two and spread to the lymph nodes, five-year survival rates hover around six percent.
Recently, Congress passed legislation that directs the National Institutes of Health to develop a scientific framework for research on cancers with five-year survival rates that are below 50 percent. Known as the as the Recalcitrant Cancer Research Act, it includes pancreatic, lung, and liver cancer, among others. Julie Fleshman, president and CEO of the Pancreatic Cancer Action Network, praised the bill in a press release this past January. Members of the organization from all 50 states appealed to members of Congress on June 18 to protect the new bill against proposed budget cuts. “It’s the biggest day of the year from an advocacy perspective,” says Ethan Blum, an advocacy coordinator with the New York City affiliate of the Action Network. “It’s about making our presence felt in Washington.”