When the Internet's Right, and Docs Aren't: A Woman's Death and a Son's Saved Life
The days of blindly accepting what the doctor says are over. Bronte Doyne, pictured here a year before her death in 2013, pleaded with her doctors to take her online self-diagnosis seriously. Tragically, she was right, they were wrong. (Photo: Bronte Doyne/Facebook)
It’s practically the first step of being sick: You search for your symptoms online and try to self-diagnose. But while all searches seem to (inaccurately) lead to cancer, sometimes the findings are legit.
That’s what happened to a British teen who begged doctors to take her concerns seriously months before she died from a rare cancer. Their response: “Stop Googling your symptoms.”
Bronte Doyne died in 2013 at age 19 after experiencing severe stomach pains, the U.K.’s The Telegraph reports. She was eventually diagnosed with a rare form of liver cancer called fibrolamellar hepatocellular carcinoma, but was told by doctors she had nothing to worry about after having surgery — even though she and her family discovered through online research that the cancer would likely return and kill her.
Now, her doctors are admitting that they made a mistake, saying that they “did not listen with sufficient attention” and that they must embrace the “Internet age.”
Meredith Gussin understands the frustration that comes with not having health concerns addressed seriously. The Miami-area mom tells Yahoo Health that she knew something wasn’t right with her son Jamie soon after he was born but doctors repeatedly brushed off her fears.
Meredith Gussin and her son Jamie, pictured her with her husband. (Photo: Meredith Gussin)
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From birth, Jamie struggled with low blood sugar and, after doing online research, Gussin discovered that it is typically due to gestational diabetes (which she didn’t have), low birth weight (which Jamie didn’t have), or a rare genetic disorder. “In my mind I kept going back to this — he must have a rare disease,” Gussin says, “but doctors kept saying ‘no, no, that’s not it.’”
After weeks of frustration, she decided to listen to advice from her doctors — and Jamie almost died. On the advice of her doctor, Gussin didn’t feed Jamie every two hours when he cried in the middle of the night and instead gave him a pacifier. At one point, he fell asleep in her arms while sucking on a pacifier and, when Gussin woke up an hour later, she knew something was very wrong.
“He was hyperventilating and sweating profusely,” she says. “He was so limp. I fed him a bottle and, as he was sucking, his eyes started opening and you could see the life come back into him.”
Jamie was rushed to the hospital where he was diagnosed with glycogen storage disease, a rare and serious condition that requires that he is constantly fed in order to function.
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Gussin’s brother, Jason James, MD, is an ob/gyn practicing in Miami who says doctors need to accept that it’s a fact of life that patients will search for their medical symptoms or those of their family online. “It’s an everyday occurrence and almost an every patient occurrence,” he tells Yahoo Health. “The days of blindly accepting what the doctor says are over.”
While James says doctors strive to do their best to properly diagnose their patients, it’s possible to miss things and the consequences can sometimes be fatal. “Medical errors account for a significant amount of deaths each year and they’re also responsible for a lot of problems,” he says.
James acknowledges that the constant self-diagnosing can occasionally be “frustrating” from a doctor’s standpoint, especially when a patient is convinced that they know what is wrong with them. But he says it can also help: “Most of the times the conditions that patients self-diagnose with are usually are the rarer forms and are unlikely to be the actual diagnosis, but it certainly encourages doctors to widen their diagnosis.”
Women’s health expert Jennifer Wider, MD, echoes that sentiment but points out that she also has a friend who kept pushing doctors about her child’s symptoms only to find that he had a rare disorder. However, she says, most of the time the answer to a health issue is more common and our constant online searching is just creating “cyber-chondriacs.”
“Patients are getting fearful,” she tells Yahoo Health. “Doctors regularly see patients who are panicked and some may take patients’ concerns less seriously because everyone is doing this.”
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The panicking can be especially dangerous for cancer patients, says Anton Bilchik, MD, PhD, chief of medicine and chief of gastrointestinal research at John Wayne Cancer Institute in Santa Monica, Calif. “When a patient is diagnosed with cancer, the first thing they do is go online and search for, say, ‘pancreas cancer,’ and go into a deep depression because they see that the survival rate is low” he tells Yahoo Health. “But they may have a favorable type of pancreatic cancer that has a good rate of survival. To make assumptions without understanding the disease can really have a negative impact on the patient and their family.”
There is also danger with well-meaning family and friends doing online research for cancer patients, he says, since they may discover a “cure” that hasn’t been scientifically validated. Then, by the time a patient sees a physician, it may already be too late. Bilchik stresses that there needs to be better communication between doctors and patients, but says we all need to be very cautious about what we read.
Most doctors will listen to their patients and address their fears, but if your doctor doesn’t take your concerns seriously, Wider says it’s time to find a new doctor.
So, what should we do? Experts say it’s important to do your own research, but make sure your information is coming from legitimate sources and check in with your doctor before jumping to any conclusions. If you still don’t think something is right or your symptoms haven’t gone away, keep pushing or find a new doctor.
“We have to be our own advocates,” says Gussin. “There’s a lot to be said for your own intuition as to what could be going on with you.”
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