Why Is Mesothelioma Misdiagnosed?

Malignant mesothelioma is a rare and complex cancer. Most physicians and many oncologists rarely see it and don’t fully understand how it works. It takes a team of doctors familiar with the cancer to accurately diagnose mesothelioma.

Mesothelioma is commonly misdiagnosed as other cancers or less serious conditions depending on where the tumors form in the body. When tumors begin to grow and spread, they cause symptoms that mirror those of other conditions.

For example, early symptoms of pleural mesothelioma, such as shortness of breath and coughing, resemble symptoms of emphysema or pneumonia.

One example, detailed in a 2021 case study, included a rare case of benign multicystic peritoneal mesothelioma in a male with previous asbestos exposure. Doctors initially misdiagnosed the condition as a hydatid cyst found in the liver parenchyma and abdominal cavity.

Common Misdiagnoses of Mesothelioma by Type

Peritoneal MesotheliomaPericardial Mesothelioma
Influenza (flu)Irritable bowel syndrome (IBS)Heart disease
PneumoniaHerniaCoronary artery disease
EmphysemaGallstonesCongestive heart failure
Chronic obstructive pulmonary disease (COPD)Ovarian cancerMetastatic lung cancer
Lung cancerOther abdominal cancersAngiosarcoma
Other respiratory conditions

If you have a history of asbestos exposure and are experiencing common mesothelioma symptoms, it is important to find a specialist who can diagnose or confirm your condition quickly. These doctors can tailor an effective treatment regimen to fit your personal needs.

Misdiagnoses of Mesothelioma by Stage

A 2012 study published in the Journal of Thoracic Oncology analyzed 1,056 mesothelioma patients to determine how often a mesothelioma misdiagnosis occurred at each stage. Almost 50% of the mesothelioma patients were misdiagnosed. More than 80% of stage 1 mesothelioma patients received an incorrect diagnosis before receiving a correct diagnosis from a mesothelioma specialist.

What to Do if You Suspect You Were Misdiagnosed

If you get symptoms in the chest or abdomen and are not convinced of your diagnosis after your initial visit with your regular doctor or another doctor who is not familiar with asbestos-related diseases, seek a second opinion from a mesothelioma specialist.

A second opinion from a mesothelioma doctor gets you access to pathologists who specialize in mesothelioma. Pathologists are the doctors who look at your biopsy samples in the lab. They’re the ones who ultimately confirm whether you have mesothelioma or a different cancer.

Second Opinions After a Mesothelioma Diagnosis

People already diagnosed with mesothelioma should get a second opinion from an expert. The average oncologist won’t have the right experience to accurately diagnose and treat your cancer.

Watch: Mesothelioma survivor Tamron Little explains how her mesothelioma cancer was misdiagnosed as a fibroid tumor.

Many unspecialized oncologists will get the cancer right, but they misgauge the stage. Mesothelioma specialists know the right tests to get an accurate stage. This makes all the difference to getting the most effective treatment.

If you have mesothelioma, a second opinion is crucial to getting the right treatment.

“This is not a knock on anyone, but many doctors only see one or two cases a year, and you don’t want to be on someone’s learning curve. Find the best. Find someone who sees this a lot.”
Dr. Abraham Lebenthal
Thoracic surgeon and mesothelioma specialist

Where to Find a Specialist

It may be easy to ask a family member or friend for a good referral when looking for a family doctor but finding a mesothelioma specialist is not so simple.

Only 2,000 to 3,000 patients are diagnosed with mesothelioma in the U.S. each year. There are few specialists and cancer centers with the resources and experience to give mesothelioma patients a fighting chance.

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How Do Specialists Diagnose Mesothelioma?

The process of diagnosing mesothelioma often starts with X-rays and other imaging tests such as CT and MRI scans.

Fluid buildup around the lungs or in the abdomen can point to many diseases. But if it recurs after being drained, more tests should be done for a possible mesothelioma diagnosis.

x-ray of mesothelioma vs pneumonia
X-ray images of lungs with pleural mesothelioma (left) and pneumonia (right). Pneumonia is a common misdiagnosis of mesothelioma.

These factors help doctors identify mesothelioma:

  • Potential history of asbestos exposure (reviewing a patient’s work history)
  • Pathology tests looking for specific mesothelioma cell types in biopsy samples
  • Imaging tests such as X-rays and CT scans
  • Blood tests looking for mesothelioma biomarkers
  • Genetic tests looking for mutations associated with mesothelioma

The only way to confirm a mesothelioma diagnosis is through a biopsy of suspected cancer tissue. Pathology tests are performed on the biopsy sample to confirm or deny the presence of mesothelioma cancer cells. This step is important to avoid a misdiagnosis.

For example, a 2019 case report described a pleural mesothelioma patient who presented with cancer growth resembling lung cancer. Proper pathology testing revealed mesothelioma cancer cells instead of lung cancer cells.

“Don’t take no for an answer. Pay attention to your body.”
Kasie Coleman
Diagnosed with peritoneal mesothelioma in 2010

An Accurate Diagnosis Leads to the Best Treatments

Treatment options are based on the diagnosis. In most cases, if a diagnosis is wrong, so is the treatment. In addition, some patients have coexisting conditions that can affect treatment, such as diabetes or heart disease.

If you have a history of asbestos exposure, make sure you discuss it with your doctor. Be attentive to warning signs that may be early mesothelioma symptoms. If they persist after a short period, take action.

Watch: Thoracic surgeon Dr. Jeffrey Velotta let’s us know how patients can get second opinions for mesothelioma.

The sooner your diagnosis is confirmed, the sooner a specialist can develop a treatment plan. Patients diagnosed in an early stage usually qualify for more aggressive treatment options. Aggressive treatment has a higher chance of extending life expectancy for mesothelioma patients.

How an Accurate Diagnosis Can Change Lives

An accurate diagnosis changed everything about peritoneal mesothelioma survivor Darlene Micciche’s treatment and prognosis.

She was originally misdiagnosed with pancreatic cancer. Seeking a second opinion changed her diagnosis to peritoneal mesothelioma. She got the right surgery and chemotherapy for her true cancer and now enjoys spending time with family and friends.

“For two weeks, I thought I had stage 4 pancreatic cancer,” Micciche said. “When they finally told me it was mesothelioma, I actually felt relieved. That was better than the diagnosis we originally thought I had.”

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