An energetic 84-year-old, Helen began complaining of stomach pains and feeling full. Her primary care doctor, unable to figure out what could cause the discomfort, sent Helen to a gastroenterologist.
He ran tests, then finally told her she needed to cut a few foods out of her diet and not go to bed until at least a few hours after dinner. He wrote a prescription for an antidepressant, and sent her back to her assisted living center.
Within a week, family members who visited Helen regularly at her Syracuse, N.Y., home noticed a change. They described her as “spacey” and moody, very unlike the always-personable Helen.
Patricia, a busy 52-year-old professional, noticed a lump under the skin on her torso. She was referred for a quick trip to a Syracuse outpatient surgery center where it was removed. Two weeks later, she got the results: a rare, terminal form of lymphoma. Patricia was immediately sent to an oncologist who insisted she begin chemo immediately so she could “buy herself another year.”
What these two women have in common is that both were misdiagnosed.
Helen was eventually hospitalized because she could no longer keep food down. A work-up in the hospital culminated in the real diagnosis: ovarian cancer, stage IV. Helen died seven months later.
Patricia is me. When I was diagnosed with terminal lymphoma in 2004, I was frightened beyond words, and desperate to learn everything I could. Eventually, over the next two months, I figured out that I did not have lymphoma. I had no malignancy whatsoever. All these years later, I have never had any form of treatment, including the chemo that the oncologist was so keen to provide.
Misdiagnosis is far more common than most of us realize. Experts and studies estimate that 12 million American adults are misdiagnosed every year, or about 1 in 20. Either the diagnosis was wrong, missed entirely or unintentionally delayed. One study done on autopsy results showed a 9 percent rate of misdiagnosis.
While some diseases are more commonly misdiagnosed than others (such as Lyme disease, ovarian cancer, thyroid disease, appendicitis and others), any diagnosis can be missed.
How It Happens
Several reasons have been proffered for the high rate of misdiagnosis. One is the reduced reimbursements to doctors, meaning our insurers are paying them less to see us. Doctors must schedule more patients in their day to make up the difference. With more patients to see, less time is spent per patient, leading to reduced accuracy.
One major category of missed diagnoses is those with no lab tests that can help in the diagnosis. But those that can be diagnosed through testing may also be incorrect. Test results may be inaccurate, misinterpreted or even linked to the wrong patient. Sometimes test results aren’t reported properly to patients, and therefore, the patients don’t take the steps needed to get the follow-up care they need.
There is also the theory of horses and zebras. That's the idea that doctors are taught to look at us as common horses — most of us have everyday things wrong with us. That means that if we are actually zebras, with an unusual medical problem, it may be missed.
The Results of Misdiagnosis
Without the right treatment, of course, our chances of improved health are diminished. Missing a cancer diagnosis, for example, means the patient doesn’t get the surgery, radiation or chemo he needs.
Just as serious as failing to get the right treatment is being provided with the wrong treatment. Imagine if I had needlessly undergone chemo. Unnecessary treatments such as surgeries, drugs, radiation, chemo or others can cause their own damage.
5 Ways To Protect Yourself
So how can we be sure we aren’t victims of misdiagnosis? Here are five steps you can take to minimize the chances, all based on the maxim, “Trust, but verify.”
1. At any appointment that culminates in a diagnosis, whether it’s the flu, cancer, or anything in between, ask your doctor, “What else can it be?” Just by discussing alternatives, and perhaps why the doctor ruled them out, you may get a better idea of whether the answer you have been given is correct.
2. Anytime you are diagnosed with something that will require an invasive treatment, such as surgery, chemo, radiation or a drug with difficult side effects, get a second opinion. From that second doctor, you want not just the diagnosis, but a list of all treatment options, too. If your opinions don’t jibe, get a third one. Your goal is to find at least two opinions that agree on the diagnosis and to make your own choice of the best treatment for you.
3. If you undergo a medical test and the results seem at all unusual, ask to be retested. In the same vein, anytime you are tested, be sure to follow up to get the results. Don’t assume that no news is good news.
4. Trust your gut. If you walk away from an appointment with any red flags, seek more information, perhaps through a second opinion, or even by doing some online research yourself. Of course, it’s easy to confuse red flags and wishful thinking, but both should result in additional information-seeking, and that’s a good outcome.
5. Already being treated, but your treatment isn’t working? Don’t assume that it’s your body that isn’t processing the treatment well. It’s entirely possible you have been misdiagnosed. Like previous examples, you’ll need a second opinion.
With so many changes going on in the health care system, it’s up to us patients to be sure we are getting what we need, not just what the system is interested in providing. Confirming a difficult diagnosis is one more responsibility we need to shoulder.
Trisha Torrey is an author, blogger and speaker covering patient empowerment and advocacy topics in hopes of helping us improve our outcomes during our journeys through the healthcare system. Learn more about her work at www.EveryPatientsAdvocate.com.