Tips on finding credible cancer information on the Internet.
A warning for newly diagnosed cancer patients eager to explore their treatment options online: Snake oil salesmen are still very much alive—and thriving.
Coffee enemas, special diets based on hair analysis, bioresonance therapy (electromagnetic waves used to diagnose and destroy a variety of diseases, including cancer), supplements derived from zeolite (a mineral that occurs naturally in volcanic rock and ash) and nutritional products, such as “cancer teas”—can all be found on the Internet. These and other so-called therapies beckon to cancer patients who, perhaps frantic for help and too easily swayed by false promises, may be tempted to forego professional advice and mainstream treatment, with possibly disastrous consequences.
Add to this quackery all of the misinformation, testimonials that don’t reflect the bigger picture, bias,conspiracy theories about standard cancer care, and conspiracy theories about standard cancer care, and uncertainty as to which legitimate therapies apply to whom exactly, and the online hunt for truth and clarity may seem like chasing a mirage.
“Even on reliable websites, statistics and medical information can be confusing and shocking,” say Susannah L. Rose, PhD, and Richard T. Hara, PhD, in their book 100 Questions & Answers About Caring for Family or Friends With Cancer. “Filter all information through your doctor to get the real story, clarify concerns and get the answers to all questions regarding treatment.”
The good news: There are tried-and-true criteria to help you gauge the reliability of Web content up front so you can bypass the fool’s gold and focus instead on the valuable nuggets. Developed by the National Cancer Institute, U.S. National Library of Medicine, Federal Trade Commission and other trustworthy sources, these criteria dig beneath the surface to establish, among other things, the sponsorship, origin, quality and currency of online information. In addition, a few authoritative websites debunk some specific products, claims, myths and hoaxes related to cancer, providing a fact-check service of sorts to dispel lingering doubts.
Results from a 2005 survey illustrate why an ability to winnow out dubious content is so essential in the digital age. Nearly 50 percent of about 5,600 respondents in the Health Information National Trends Survey said the Internet was their most recent source of information about cancer, compared with nearly 24 percent who cited a healthcare provider as that source.
Yet healthcare providers are a key factor in this equation. A problem for many cancer patients, beyond the reliability of online information, is figuring out which research findings apply to their particular circumstances, says Paul Helft, MD, a gastrointestinal oncologist at the Indiana University Melvin and Bren Simon Cancer Center and director of the Charles Warren Fairbanks Center for Medical Ethics in Indianapolis. The challenge is greater for patients with rare cancer, because there are fewer studies and uniform treatments to read about.
Helft says that even if their online searches are productive, most of his patients still want something the Internet can’t offer: expert advice. “They don’t come in and say, ‘I think I’ve made up my mind what I’m going to do.’ They come in and say, ‘I have a better idea, a better understanding of what I’m supposed to do, but I want you to tell me what you think I should do.’”
Carol Haines is a big believer in such advice. In July 2011, Haines, a 38-year-old healthcare project manager in Pittsburgh, received a diagnosis of colon cancer. She had a tumor removed and underwent chemotherapy and radiation. The oncologist’s treatment plan guided her Internet searches so she could focus on the best, most reliable information and avoid the questionable content she encountered, such as pitches by drug companies, websites abroad, sites seeking donations and sites pushing herbal remedies and other alternative treatments.
In Haines’ view, a lot of testimonials in blogs and discussion groups about chemotherapy and radiation side effects are negatively skewed, perhaps because patients whose experiences were more positive have moved on with their lives and are too busy to post. “When I started reading about treatment,” she says, “I thought I would have to give up all my activities, to not work and just basically sit at home for the next six months. It turned out not to be that way at all.”
Most troubling for some professionals is the blatant quackery, online versions of which are more rampant than ever, largely unregulated and virtually unstoppable. Herbal remedies touted as cancer therapies are particularly disconcerting for Barrie Cassileth, PhD, because many consumers don’t realize that these may interfere with chemotherapy and prescription medications.
“In fact, herbal remedies can be very dangerous, especially if someone is on medication of any kind because there are a lot of herb-drug interactions,” says Cassileth, founder and chief of the Integrative Medicine Service at Memorial Sloan-Kettering Cancer Center in New York City. Empirical evidence in the cancer center’s “About Herbs, Botanicals & Other Products” database casts welcome light on more than 250 substances, techniques and products that allegedly cure cancer.
Still uncertain about that “miracle cure” you saw online? Many times, a simple test suffices: If it sounds too good to be true, it probably is.