At just 15 years old, Jeff Henigson was diagnosed with a rare form of brain cancer. The prognosis for survival was grim. Despite that, he is still alive 35 years later. After the BBC published an article about him last summer, he received an interesting email from a neuropathologist. The man said that he believed Henigson was misdiagnosed. (1)
35 Years Later, Man Learns Doctors Misdiagnosed His Cancer
At 50 years old, Jeff Henigson was what many would consider a medical miracle. This is because, in 1986, he received a diagnosis of rare brain cancer called anaplastic astrocytomas. Given two years to live, he is still alive 35 years later. The BBC published a story about his miraculous life in July 2020. (2) Since its publication, Jeff regularly receives numerous emails and letters of congratulations and praise. (1)
One day, he received an email from a neuropathologist named Karl Schwarz. In his email, he stated that he only had seen three people out-survive their diagnosis throughout his entire career. Two of those three ended up being misdiagnosed. (1)
He requested a phone call with Jeff to talk more about this possibility. Jeff agreed and called Schwarz a couple of weeks later. (1)
Why The Wait?
If you’re wondering why Jeff waited so long to call, it’s because, within that time, he had a seizure. Seizures are something that has been a regular part of Jeff’s life since 1986. (1) That summer, while riding his bike, he was hit by a van and thrown 10 feet into the concrete, landing on his helmet-less head. He woke up in the hospital a few hours later but was shockingly okay. So okay, in fact, that the doctors sent him home that day. (2)
Within a few weeks of the accident, however, Jeff began having seizures. He went back to the hospital, where the doctors found a tumor on his brain. After surgery to remove the tumor, the doctors then gave him the terrible news: He had an aggressive, rare form of brain cancer. (2)
What ensued were rounds of radiation and chemotherapy treatments. Despite this, he was given just two years to live – but then he didn’t die. (2)
Over three decades later, Jeff still suffers from occasional seizures. When he has them, his memory is temporarily affected, which is why he put the call on hold. (1)
A Life-Changing Misdiagnosis
During their phone call, Schwarz reiterated something Jeff already knew: How incredibly rare it was that he had survived this type of brain cancer. After hours of conversation and combing through Jeff’s medical records, Schwarz concluded that 35 years ago, Jeff had been misdiagnosed. (1)
The tumors listed in two of the three reports were benign. The third report, Schwarz found, was simply incorrect. Jeff was shocked. He went through difficult treatments and decades of constant fear that his cancer would return and finally kill him. All this time, there was never any cancer, to begin with. (1)
Misdiagnosis Can Cause Serious Harm
Stories like Jeff’s are unfortunately more common than you might think. What’s worse, most misdiagnoses end in permanent damage or death, on top of the psychological and emotional trauma patients and their loved ones go through.
Researchers from John Hopkins Medicine in Baltimore found that between 40,000 and 80,000 deaths in American hospitals each year may be due to misdiagnosis. Furthermore, 80,000 to 160,000 people may suffer serious harm from misdiagnosis each year. (3)
The researchers attribute this to the difficulty that is diagnosing patients in the first place.
“We know that diagnostic errors happen across all areas of medicine,” explains first study author Dr. David Newman-Toker. “There are over 10,000 diseases,” he goes on, “each of which can manifest with a variety of symptoms, so it can be daunting to think about how to even begin tackling diagnostic problems.” (3)
The team’s goal is to use these findings to figure out how the diagnoses can improve so that this happens less often. They found that clinical judgment failure is the most common reason for misdiagnosis. There are a number of ways to make this better (3):
- Improving teamwork skills and education
- Using technology to help with diagnosis
- Giving people quicker access to a medical specialist
They say it won’t be easy, but it is a solvable problem.
“If we devoted appropriate resources to tackling misdiagnosis of the ‘big three’ diseases we identified [cancer, infection, vascular issues], we could potentially save half of the people who die or are permanently disabled from diagnostic errors.” says Dr. Newman-Toker. (3)
How To Avoid Being Misdiagnosed
A misdiagnosis can be as life-altering as a correct one, so it’s important to know what you need to do to avoid what happened to Jeff.
1. Always Get A Second Opinion
And a third, too! Typically with serious diagnoses such as cancer, getting looked at by more than one doctor will decrease your chances of being misdiagnosed. Reasons to seek a second or third diagnosis are (4):
- Your doctor isn’t sure about the type or extent of your cancer.
- You think your doctor underestimates the seriousness of your cancer.
- You have a rare form of the disease.
- Your doctor doesn’t specialize in your type of cancer.
- You think other treatments may be available.
2. Talk Openly With Your Doctors
I know that a cancer diagnosis is scary, and likely your brain is swimming with fear and medical jargon that you don’t understand. Be open and honest about your symptoms, how you’re feeling, and never let any questions go unanswered. Even if you think a question is silly or simply want a more thorough answer, ask them. (4)
3. Keep All Medical Records
Keep a copy of all of your medical records. This includes pathology reports and hospital stays. The hospital won’t keep your records forever, but you can in case anything changes in the future. (4)
4. Request Collaboration
You’ve been seen by more than one doctor, so ask if they can get together or at least speak over the phone about each of their diagnosis, whether they’re the same or not. If you have two different diagnoses from two different doctors, get a third opinion. (4)
There are plenty of resources for patients to help you navigate diagnosis and misdiagnosis, including:
- The American Society of Clinical Oncology
- The American Medical Association
- Cancer Survivor’s Network
- Cancer Support Community
Remember, it’s your body, your health, and your life. You are allowed to ask questions, make requests, and make sure others are doing their due diligence to ensure that you are not misdiagnosed.
- “My life was upended for 35 years by a cancer diagnosis. A doctor just told me I was misdiagnosed.” Washington Post. Jeff Henigson. March 26, 2021
- “The dying teenager who wanted world peace (and love).” BBC. Natasha Lipman. July 26, 2020.
- “Misdiagnosis of the ‘big three’ results in ‘serious harm’.” Medical News Today. Lauren Sharkey. July 22, 2019.
- “How to Handle a Cancer Misdiagnosis.” Web MD. Jennifer Robinson, MD. June 19, 2020.