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 What’s worse, information about cancer research and treatment may be riddled with inaccuracies, out of date, or incomplete.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
- Decode the website: When you’re navigating through the flood of information online, pay attention to domain names, Lewis says. Sites that end in .edu, .gov, and .org tend to be more reliable than those that end in .com.
- Watch the major nonprofit organizations: Some of the best resources for pancreatic cancer information on the web comes from nonprofit organizations that act as a sort of clearinghouse for the most up-to-date information about pancreatic cancer research and treatment. Check Charity Navigator and Candid (created by the merger of GuideStar and Foundation Center) for key players in this category. A few favorites: American Cancer Society and Stand Up To Cancer for more general cancer information, and Let’s Win, Lustgarten Foundation, Pancreatic Cancer Action Network (PanCAN), and World Pancreatic Cancer Coalition for pancreatic cancer information.
- Identify the experts: If you want to learn the names of the pancreatic cancer experts, look at the Scientific Advisory Boards of nonprofits such as Let’s Win, Lustgarten Foundation, and PanCAN, which include many of the top doctors and researchers in pancreatic cancer.
- Follow those experts on social media: Many of the major players in pancreatic cancer research are on Twitter, and you can follow them. “It’s a free-for-all, but it also allows the good information to bubble to the top,” explains Lewis. “If you’re curious about someone’s credentials, plug their name into www.PubMed.com and see if they’ve published research in the pancreatic space.” Lewis is active on Twitter, at @marklewismd.
- Focus on centers of excellence: There are 70 NCI-Designated Cancer Centers in the United States, all over the country. Visit the “News” sites for a few of them and subscribe to receive their updates. Over time, you’ll notice these major players tend to agree on staging and treatment strategies. Then you can discuss the advances you learn about with your doctor.
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
- Check the study: Pull up studies in PubMed. Then pay attention to the “n” (the number of people in the study), look at who is funding the research and check whether the findings are “statistically significant” (you’re searching for something called a “p-value” and looking for a number less than 0.05). It’s important to note that there are different phases of research, too, so while a phase I study may look promising, the research could fall apart in the second, third, or fourth phase. “Look at the number of the study,” suggests Lewis. “The bigger the number, the better the information.”
- Scope out clinical trials: Sifting through ClinicalTrials.gov to identify relevant trials can be a challenge. Ask your doctor for resources that will link you directly to trials that make sense for your particular diagnosis. Let’s Win, Lustgarten Foundation, PanCAN, and the NCI can help direct you to appropriate trials.
- Follow the National Comprehensive Cancer Network (NCCN): The NCCN is a communication platform for oncologists to share information. “They’re the ones who develop the standard of care guidelines for all types of cancer,” says Doig. Now four years post-Whipple, Doig still stays abreast of NCCN updates to ensure he has the latest information about pancreatic cancer care.
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:
- Work with your physician: Members of online communities, well-intentioned family members and friends, even strangers on the street may try to nudge you toward alternative treatments. Not only are some therapies ineffective, they could be harmful. “Even dietary strategies, such as nixing sugar or following a ketogenic diet, can potentially compromise patients’ ability to fight their disease,” cautions Lewis. While some of these therapies may be worth investigating, all of them should get a “thumbs up” from your oncologist before you dive in.
- Be wary of buzzwords: The media, and even doctors, often use words like “breakthrough,” “miracle cure,” “revolutionary,” and “gamechanger” to describe evolving cancer research. While advances in immunotherapy, targeted therapeutics, and genetic testing show great promise, such superlative words are often misleading. In fact, most of these so-called groundbreaking therapies are still, quite literally, under the microscope.
- Approach online communities with caution: The web offers a treasure trove of information and supportive resources. It’s also a great way to connect with other patients virtually and share your experiences. “I find my patients with pancreatic cancer to be the most self-advocating because they know they’re up against a fearsome foe,” says Lewis. “They hear things in oncology clinics that are truthful but also very disheartening. It’s natural for patients and their caregivers to wonder, ‘is there something better?’”
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.”