From Comments from Karyn M. Dyehouse, MD, neuro-oncologist, medical oncologist, hematologist and Chief Medical Officer with OHC. Article by Jane E. Brody of The New York Times
January 23, 2019
When faced with an actual or potential diagnosis of cancer, most people are inclined to consult Dr. Google, often before they see a real live medical expert. Unfortunately, Dr. Google doesn’t always know what’s best.
A generation ago, patients were largely dependent upon the physicians they consulted as to how best to deal with a disease like cancer. Nowadays there’s the internet, replete with a virtual tsunami of information offered by all kinds of sources, from experts equipped with evidence-based facts to people selling products or outright quackery. The trick is to know how to tell the difference, especially since the disparate guidance provided can become a matter of life or death.
“It’s easy for people to land on a site filled with misinformation that leads them to make decisions that may not be in their best interests,” Dr. Lidia Schapira, medical oncologist at Stanford University Medical Center, told me. She is editor of the very reliable site, www.cancer.net, that provides clear, scientifically vetted information about cancer and its treatment for patients, their families and friends.
As a specialist in breast cancer, Dr. Schapira has treated women who decline postoperative therapy with a drug like tamoxifen or an aromatase inhibitor because they read on the web that the treatments are harmful, despite extensive studies showing they can help prevent a breast cancer recurrence. “The conviction about harm is an emotional reaction, and it’s very difficult for a doctor to talk facts through emotions,” she said.
“So many of our patients tell us they looked for their diagnosis on the Internet and it terrified them,” said Karyn M. Dyehouse, MD, a medical oncologist, hematologist and Chief Medical Officer at OHC. “And then they say, ‘I’ll never do that again.’ We recommend patients speak with their doctor first for accurate information, especially about the latest treatments and clinical trials for their disease. Then if they check the Internet, they’ll at least have the accurate, scientific-based information to dispel any misinformation or claims.”
As the American Cancer Society cautions, “The wrong information can hurt you when it comes to cancer. A lot of what passes for cancer information on the internet is made up of opinion, salesmanship, and testimonials and is not grounded in careful science. Anyone can post any kind of information online, and some people may be passing along information that’s limited, inaccurate or just plain wrong. Some even try to deceive you.”
Worried about an unexplained symptom? The internet offers about two dozen “symptom checkers,” and patients can actually freak themselves out by searching the web for their symptoms and finding cancer as a possible cause. Just about any symptom, from a persistent cough to chronic constipation, can be caused by cancer, but a qualified doctor can readily rule out cancer with a proper medical examination and review of a patient’s personal and family history.
“One of our patients in her early 30s with cervical cancer told us she had researched the Internet, and after reading numerous web sites, decided she had better get her bucket list together,” explained Dr. Dyehouse. “The misinformation scared her to the point of thinking about the little time she thought she had left. Instead, we treated her and she’s cured because her cancer was caught very early.”
People looking for the latest iteration of snake oil will surely find it on the web. Steer clear! The cancer society cautions to beware of any postings that make claims like “scientific breakthrough,” “secret ingredient,” “miraculous cure” or ancient remedy,” as well as products offering money-back guarantees, available from only one source or said to cure a wide range of ailments.
That said, people facing cancer often can glean valuable information and support through the internet. “The internet can be a tool that can give people access to good scientifically vetted information,” Dr. Schapira said. “It can help patients be better prepared for a consultation with an expert. And after such a consultation, they can check on the wisdom of the advice they got.”
She suggests relying on web-based resources that are free of commercial interests. Even sites posted by medical institutions can be self-promoting. In addition to www.cancer.net, which is prepared by members of the American Society of Clinical Oncology, Dr. Schapira recommended information offered by the American Cancer Society (www.cancer.org) and the National Cancer Institute (www.cancer.gov), as well as the free patient-oriented arm of a site called UpToDate that translates into lay terms the best available information that doctors get. The cancer institute notes that the three letters attached to a site’s domain name can give people insight into the independence and validity of information it contains; best to choose .edu or .gov over .com.
“You can also rely on web sites belonging to cancer doctors, hospitals and health systems,” Dr. Dyehouse added. “They follow strict guidelines set forth by the Federal government, the Joint Commission and often use sources like the National Cancer Institute and the American Society of Clinical Oncology. And typically, the information is reviewed by doctors before it’s posted. It definitely is on our web site.”
In addition to providing valuable information and guidance to trustworthy sources, the internet can help patients glean psychosocial support through online groups. In a review of 170 studies of patients who use information technology, Danielle Gentile of the Levine Cancer Institute of Atrium Health in Charlotte, N.C., and her co-authors found that social media communities can be very helpful to cancer patients, especially those who lack personal social support. Cancer patients can converse with others, anonymously or otherwise, about emotional and spiritual issues and glean helpful firsthand tips on dealing with treatment-related issues.
But while some online communities “are curated by medical professionals, others may be posted by people who have no scientific knowledge,” Dr. Schapira cautioned. The information patients glean through such lay communities is best discussed with their doctors lest they be led down the garden path of bad advice.
She also suggested that patients not be pressured to research their cancers until and unless they are emotionally and intellectually ready to deal with the information they uncover.
“It may be better to let others look things up,” she said. “Different people need different information at different times. Some people are not ready to absorb all the information upfront, and that’s completely normal. Some want to receive the information but leave decisions to the experts, while others want to have a hand in making the decisions.”
Don’t be afraid to discuss alternative remedies with the doctors treating your cancer, and be sure to tell them about any such remedy you plan to try in case it can interact badly with prescribed treatments. Nearly all major medical centers now have departments of integrative medicine, and today’s oncologists are well aware of how much the mind can influence the body’s well-being, Dr. Schapira said.Comments (0)