It’s hard to fathom that the third leading cause of death in America before Covid came on the scene was medical errors or misdiagnosis of conditions. Not that anything has changed because of Covid, it only knocked it to the fourth leading cause of death. 

My own experience of misdiagnosis with breast cancer for fifteen months caused me to do some research when my lawyer brought up the term “standard of care.” The first thing to know is that this term is legal, not medical. That means it is lawyers, not doctors, who use it. They will only talk about the standard of care if they are testifying in court on a medical malpractice case or attending a malpractice seminar.

Based on the hypothetical practices of a competent health care professional, the standard of care is determined by considering the medical knowledge available in the field. Doctors and other health care professionals are judged by the customary practices of similar care providers.

Health care professionals know most medical procedures and treatments involve some risk or complications, and they don’t want patients to think all complications involve negligence. 

A standard of care can refer to informal or formal guidelines generally accepted in the medical community for treating a disease or condition. It can be a clinical practice guideline, a formal diagnostic and treatment process a healthcare provider will follow for a patient with a certain set of symptoms or a specific illness. 

These standards of care are developed over time, and in other cases, they result from clinical trial findings. However, a standard of care in one community will not necessarily be the same in another. And one healthcare provider’s standard can vary from another healthcare provider’s standard, meaning doctors are not on the same page when it comes to medical practices.

Diagnosing illnesses is not always straightforward. Mistakes can be made even when reasonable and expected care is given by a doctor. According to a new study from Johns Hopkins School of Medicine, of the ten thousand diseases doctors may identify in treating patients, fifteen stand out as the most commonly misdiagnosed:

Stroke, sepsis (blood infection), heart attack, blood clots in legs and lungs, rupture of the aorta, blockage of blood supply to internal organs, meningitis and encephalitis, spinal infection, pneumonia, endocarditis (heart infection), lung, breast, colon, prostate, and skin cancer.

Nearly 100,000 people die each year because of mistakes hospitals make, and almost twelve million outpatients in the U.S. are misdiagnosed yearly. That’s five percent of adults or one in twenty.

Misdiagnosis Is a Result of:

• Inadequate patient assessment. This means the doctor failed to take a complete history of the condition, didn’t get a thorough family history, or didn’t administer a thorough-enough physical exam.
• Failure to order appropriate diagnostic tests. This can mean ordering no tests, ordering the wrong tests, or ordering too few tests.
• Failure to refer the patient to a specialist.
• Failure to follow up.

The cost of misdiagnosis is astronomical. Experts estimate that approximately $750 billion gets wasted yearly due to money spent on unnecessary procedures, medications, and lost work time. In addition to the financial costs, misdiagnosis can be emotionally draining.

My misdiagnosis in December 2001 caused financial and emotional costs. At 45, I found a pea size lump in my right breast. I went to my physician for a mammogram and an ultrasound of the area. The doctor diagnosed me with a fluid-filled cyst and told me to keep an eye on it. By the following December, the cyst, now the size of a quarter, didn’t cause me to worry because they told me it wasn’t breast cancer and that if the mass got bigger, they would drain it by needle aspiration. 

In April 2003, I became due for another mammogram. My contract at work expired in May, and I enrolled in massage therapy school, attending in the evenings after my day job. Not sure when I’d have insurance again, I made all my doctor appointments while I still had it. The pea size lump was now the size of a large lime. It was itchy and needed to be drained. 

During my appointment, the attending physician became worried. He ordered a mammogram and an ultrasound. Due to the size of the lump, the tech squashed my breast to the point that it became bruised. Surprised nothing showed up on the pictures; she sent me down to get the ultrasound. After the tech took a few pictures, she left the room. I looked at her screen. A large black mass stared back at me, and it had tentacles. 

The tech informed me to schedule a biopsy with the receptionist. I asked her why, and she told me to ask my doctor. I asked to speak to the doctor, but she had left for the day. Biopsies were scheduled every Wednesday without deviation. My week-long wait caused me anxiety while calls to the doctor went unanswered—the same doctor who diagnosed my small lump as a fluid-filled cyst.

On Wednesday, I went in to get my biopsy. A work colleague came with me for support. Nine days later, I received a phone call. However, she left me a message because I went to school at night. The following day, I called my boss and told her I’d be in after I spoke with the doctor. Not sure if the news would be good or bad; I didn’t want to drive home bawling my eyes out. 

My doctor finally called me back later that morning and told me the bad news. “You have breast cancer” must be the four most dreaded words a woman can hear. My life flashed before my eyes. I found it hard to digest. I asked her how long I had it, but she couldn’t answer my question.

The future became filled with doctor appointments, chemotherapy, and radiation therapy. A month later, I had surgery, and that small pea size lump had always been Invasive Lobular Carcinoma. This subtype of breast cancer is not detectable with a mammogram. I also had dense breast tissue, which automatically means I need more than a mammogram to get a clear picture of my breast.

When I got my ultrasound pictures from 2001, the picture of the ‘cyst’ appeared. At that point, my doctor should have scheduled a core needle biopsy, but instead, she told me to ‘keep an eye on it; after all, I was too young to get breast cancer despite my family history. 

Not knowing much about breast cancer, I had no idea there were different subtypes of breast cancer. The more women I spoke to, the more I discovered that many women know nothing about breast cancer. Like me, they start their research after their diagnosis; sometimes, it can be too late. 

I had Stage 3B Invasive lobular carcinoma, with 19 lymph nodes removed from my right side. Seven presented with diseased cells, meaning cancer had spread. I chose to have a double mastectomy with reconstruction. I underwent a clinical trial on a new hormone inhibitor, which is how hormone-based breast cancer is treated. I could tolerate the hormone inhibitor for only two and a half years rather than the recommended five years. The unbearable pain in my joints allowed me to decide that quality over quantity of life was a better option for me. 

Celebrating nineteen years this past May has made me grateful every day. Each year I go for my CT scans, and I am NED (No Evidence of Disease.) 

Financially and emotionally the cost for me still occurs to this day. I can never get life insurance, I have a thyroid condition from the treatments I will have for the rest of my life, and I have osteoarthritis, which causes excruciating pain in my joints and neck. I gave up my schooling as a massage therapist, unable to perform the job due to all the medical complications that follow a cancer diagnosis.

PTSD is a real thing. Every year before my scans, every new ache or pain is a thought that cancer may be back. The possibility is real. I have to live with it for the rest of my life. And whereas my original medical team should have gone into a different profession, the second medical team, who saved my life, should be given awards. 

Even though I still suffer from this misdiagnosis, the presentations I did in high schools to teach young women about breast cancer became my payback. For seven years, every October, I scheduled high school workshops, with permission from the school and the parents, to educate their girls on breast cancer and breast health. When those workshops ended, I wrote a book because the girls asked me to continue my work.

My mantra: Knowledge is power. The more knowledge we have, the better we can advocate for ourselves. Being your own advocate may someday save your life. 

The Journal of Clinical Oncology reports that cancer is misdiagnosed up to 28% of the time, but with certain types of cancer, that number jumps to 44%. Melanoma, breast cancer, lymphoma, and sarcomas are the most misdiagnosed malignancy subtypes.

In the Johns Hopkins study, the authors named several steps that the medical profession could take to reduce diagnostic errors:

• Supplement the doctor’s medical judgment using computer-based diagnostic decision support tools.
• Make access to specialists far easier by allowing patients to see specialists at the point of care instead of scheduling weeks and months in the future.
• Encourage teamwork in making diagnostic pronouncements; include patient input in that process.
• Improve diagnostic education for medical professionals through simulation training.

According to the Society for the Improvement of Diagnosis in Medicine (SIDM), 40,000 – 80,000 individuals die yearly from misdiagnosis. It’s an issue that affects every part of the healthcare industry, from doctors and healthcare systems to patients whose lives could be in jeopardy due to incorrect diagnoses and the rise in misdiagnosis statistics in the United States. 

It’s also a complex problem to solve. This isn’t the same as discovering a cure for a single illness. There are structural issues that need to be addressed in healthcare. Medical professionals must also learn how to keep up with the rapid changes in technology and innovation that appear to be a constant in the healthcare industry.

What can we do until the medical community implements these recommendations?

• Don’t ever accept the first diagnosis you receive, particularly if the physician is recommending major surgery or a dangerous drug.
• If your intuition tells you there’s something wrong with you and the physician dismisses your complaints, get a second opinion. If you are still unsatisfied, seek a third opinion.
• Try to find a physician who will spend some time researching your symptoms.
• Diagnosing illnesses is not always straightforward. Even when doctors and others provide reasonable and expected care, mistakes can be made. The key is to pay attention to signs your body may be giving you. Don’t become a victim of the standard of care.