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

Early symptoms of pleural mesothelioma 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

Almost 50% of mesothelioma patients got misdiagnosed in a 2012 study. Published in the Journal of Thoracic Oncology, it analyzed 1,056 mesothelioma patients. More than 80% of stage 1 mesothelioma patients received an incorrect diagnosis. A correct diagnosis usually comes from a mesothelioma specialist.

What to Do if You Suspect You Were Misdiagnosed

Seek a second opinion from a mesothelioma specialist if you have a history of asbestos exposure. If you get symptoms in the chest or abdomen, find a doctor familiar with asbestos-related diseases.

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.

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

Most mesothelioma doctors work at top cancer centers throughout the country.

Only 2,000 to 3,000 patients get diagnosed with mesothelioma in the U.S. each year. Few specialists and cancer centers have 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. A biopsy provides an official diagnosis. It tests cancerous tissue under a microscope.

Fluid buildup around the lungs or in the abdomen can point to many diseases. But if it recurs, more tests should follow.

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 get determined by 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.

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 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.”