When you discover you have pancreatic cancer, your first inclination may be to hit the web. Here's some strategies to navigate the information overload.
When you discover you have pancreatic cancer, your first inclination may be to hit the web. Is the stage I have curable? What are the most effective treatment strategies? Can surgery cure the disease? How long do I have to live?
If you’re typing questions like these, or asking Siri, Alexa, or any virtual assistant, you’re in good company. Instead of relying on a doctor or oncologist, an increasing number of patients are turning to the internet not only to diagnose what ails them, but also to identify out-of-the-box treatment solutions.
“Research suggests that people process cancer related information based on perceived source credibility,” says Sylvia Chou, Ph.D., M.P.H., Program Director of the Health Communication and Informatics Research Branch at the National Cancer Institute (NCI). Unfortunately, some sources that look trustworthy—including words like ‘institute,’ ‘center,’ ‘society,’ or ‘association’ as part of their name—may offer information that is not grounded in scientific evidence.
Getting to the Good Pancreatic Cancer Information
The deluge of information on the web is not only confusing, it also has the potential to cause harm. Rankings on Google, for example, aren’t based on merit. Instead, it’s “pay for play” in most cases. What’s worse, information about cancer research and treatment may be riddled with inaccuracies, out of date, or incomplete.
The good news: There are a few surefire strategies that can help ensure you get quality information at your fingertips when you need it. We asked two experts—both who are also pancreatic cancer patients—for their sleuthing suggestions. Oncologist Mark Lewis, M.D., of Intermountain Healthcare in Utah, was aware of his family history and diagnosed himself at age
30 with a pancreatic neuroendocrine tumor during the first week of his oncology fellowship. Steve Doig, now a journalism professor at Arizona State University, spent much of his career with newspapers, including the Miami Herald. Here’s what they had to say.
Identify Solid Sources
Whether you’re questioning treatment recommendations, or you want solid data about survival, it’s important to ensure you’re getting information from reliable sources.
A few strategies:
Learn About Research
Unfortunately, cancer research findings are often hyped by the media and by physicians themselves. Your best bet is to learn how to read scientific research, says Doig, who was a science editor (among other positions) during his newspaper career. He has been decoding scientific studies for decades.
Doig, now 71, learned he had pancreatic cancer in 2014. “I knew how to read medical studies. I understood risk ratios. And I made a point of reading the studies themselves rather than news headlines,” he says. While most patients don’t have that level of expertise, they can learn how to translate basic research findings.
A few strategies:
Watch Out for Trouble
It’s easy to get sucked into promises of spontaneous remission if only you would . . . fill in the blank. Popular blanks include follow this diet, try this herbal remedy, take this potent supplement . . . and the list goes on. “If it really worked, oncologists and major cancer centers would be pushing it, too,” says Doig.
A few strategies:
Some online patient communities can drag you down rather than build you up, cautions Doig. The best communities are those that are medically vetted. Organizations like Let’s Win, NCI, and American Cancer Society can help link you to both online communities and real-life support groups to help you connect.
Don’t Go It Alone
Plenty of organizations, including Let’s Win, offer credible, scientifically vetted information online. The key is to work with your doctor to ensure the cream rises to the top—and that the information you’ve uncovered is credible.
“Patients have the right, maybe even the responsibility, to seek information from their doctors,” says Chou. “This is not an area where you should ‘go it alone’ without medical guidance.”