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A mesothelioma misdiagnosis is a wrong or delayed diagnosis. Some mesothelioma symptoms are similar to other diseases. As a result, doctors may mistakenly diagnose patients with other diseases, like lung cancer or inflammation (pleuritis). Seeing a mesothelioma expert may help patients avoid this.

01. Misdiagnosis Overview

Why Does Mesothelioma Misdiagnosis Occur?

A mesothelioma misdiagnosis happens when the disease is incorrectly diagnosed as another illness. This may happen because malignant mesothelioma has the same symptoms as other conditions.

Doctors may have trouble accurately diagnosing malignant mesothelioma for many reasons. In part, trouble with diagnosis comes from the disease’s non-specific symptoms. For example, common symptoms of pleural mesothelioma include a dry cough and shortness of breath. These symptoms are also similar to the flu or pneumonia.

Many doctors have not seen mesothelioma in clinical practice. If they do not know about a patient’s asbestos exposure, the doctor may suspect a more common condition. As a result, the physician may not order the right tests for diagnosing mesothelioma.

Patients who get a mesothelioma diagnosis typically see their doctor because they do not feel well. Then, the doctor uses exams and tests to narrow down the cause of the patient’s symptoms. The mesothelioma diagnostic process may include:

  • A physical exam
  • Blood tests
  • X-rays
  • Other advanced imaging tests, like CT scans
  • A biopsy, which a laboratory then studies

Mesothelioma Can Share Symptoms With Other Common Conditions

Mesothelioma and some common conditions have the same symptoms. These similarities can confuse both patients and doctors. If a patient forgets or is not aware of past asbestos exposure, it may delay the diagnosis.

Based on their symptoms, pleural mesothelioma patients may believe they have common respiratory conditions. Doctors may also relate the patients’ symptoms to these conditions. For example, symptoms shared between bronchitis, the flu, pneumonia and pleural mesothelioma include:

  • Chest pain
  • Difficulty breathing
  • Dry cough
  • Fatigue
  • Fever
  • Loss of appetite
  • Night sweats
  • Pain
  • Weight loss

Peritoneal mesothelioma patients may have symptoms that resemble irritable bowel syndrome, Crohn’s disease or ovarian cancer. These include:

  • Abdominal pain
  • Abdominal swelling
  • Feeling full early
  • Fever
  • Intestinal obstruction
  • Loss of appetite
  • Nausea
  • Night sweats
  • Pain
  • Weight loss

Patients May Forget Risk Factors

Some risk factors, like asbestos exposure, may be forgotten over time. Some patients may not even know they were exposed to asbestos. Patients who forget or don’t know the risks may not mention exposure to their doctors. Not having this information may contribute to doctors providing a misdiagnosis.

Often, patients forget they were exposed because of mesothelioma’s long latency period. A latency period is the time from exposure to when symptoms start showing up. Mesothelioma has a latency period of 10 – 50 years.

Staging May be Difficult

Incorrectly estimating the stage of a patient’s cancer can have negative effects similar to a misdiagnosis. Staging is a process that determines how much mesothelioma is in a patient’s body. Staging helps the doctor develop a mesothelioma treatment plan.

The tumor’s location and shape may make staging difficult. An incorrect stage can limit a patient’s treatment options. So doctors may order additional tests before proceeding to treatment. These extra insights can improve staging accuracy and help the patient get the right therapies.

Mesothelioma Experts Are Rare

There are fewer doctors with experience treating mesothelioma than other cancers. This may be partly because the disease is rare. The United States reports roughly 3,000 new mesothelioma cases each year.

Anyone with symptoms of mesothelioma may want to see a doctor with specific mesothelioma experience. Research suggests patients have better outcomes when treated by mesothelioma doctors with experience diagnosing and treating this cancer.

Experienced mesothelioma doctors are available across the country. People with a preliminary mesothelioma diagnosis can seek a second opinion from a specialist.

The High Stakes of Misdiagnosis

Researchers have studied the misdiagnoses of many conditions, including cancers. For example, one study examined malpractice claims. It found clinical judgment errors caused the majority of cancer misdiagnoses. These errors led to delays or failures to order:

  • Diagnostic tests in 51% of cancer misdiagnoses
  • A consult or referral in 37% of misdiagnoses

Research into mesothelioma has suggested misdiagnoses are not uncommon. In one study, 50% of mesothelioma patients received a misdiagnosis. Doctors initially diagnosed these patients with other conditions. This information reinforces the importance of getting a second opinion.

02. Common Misdiagnoses

What Are Common Mesothelioma Misdiagnoses?

Doctors have misdiagnosed each of the four types of mesothelioma as other illnesses. Common misdiagnoses may happen because of shared symptoms between mesothelioma and other conditions.

All mesothelioma types develop in the thin linings that surround organs and bodily areas. The main forms of mesothelioma are:

Misdiagnoses generally blame the cancer’s symptoms on an illness that affects the same body area. For example, peritoneal mesothelioma has been mistaken for gastrointestinal illnesses.

Common Pleural Mesothelioma Misdiagnoses

Pleural mesothelioma is a cancer that starts in the lining around the lung (the pleura). It is the most common type of mesothelioma. Pleural mesothelioma has been misdiagnosed as:

  • Benign fibrous tumor
  • Empyema (pus in between the lung and its lining)
  • Lung cancer
  • Pleuritis (inflammation of the lining around the lungs)
  • Reactive mesothelial cell proliferation (cells with abnormal appearance due to inflammation)

Pleural mesothelioma symptoms may be mistaken for:

  • Bronchitis
  • Chronic obstructive pulmonary disease (COPD)
  • Flu
  • Interstitial lung disease (scarring of the lungs)
  • Lung cancer
  • Pneumonia

If you were exposed to asbestos and diagnosed with one of these conditions, you may want a second opinion.

Common Peritoneal Mesothelioma Misdiagnoses

Asbestos exposure causes peritoneal mesothelioma. It starts in the thin lining of the belly (the peritoneum). It is the second most common type of mesothelioma. Peritoneal mesothelioma has been misdiagnosed as:

  • Benign mesothelioma
  • Breast cancer
  • Diverticulitis (infection or inflammation of the lining of the intestines)
  • Ischemic colitis (reduced blood flow to the large intestine)
  • Ovarian cancer
  • Sarcoma (connective tissue cancer)
  • Uterine cancer

Peritoneal mesothelioma symptoms may be mistaken for:

  • Crohn’s disease (a form of inflammatory bowel disease)
  • Irritable bowel syndrome
  • Ovarian cancer
  • Peritoneal carcinomatosis (cancer that has spread to the abdominal lining)

Mentioning past asbestos exposure may help doctors focus testing on mesothelioma.

Common Misdiagnoses for Rare Mesotheliomas

The final two types of mesothelioma are pericardial mesothelioma and testicular mesothelioma. Each of these rare types of mesothelioma accounts for less than 1% of all mesothelioma cases. Pericardial mesothelioma develops in the lining around the heart. Testicular mesothelioma starts in the lining around the testes (the tunica vaginalis). Both types have been misdiagnosed as other conditions.

Pericardial Mesothelioma

Pericardial mesothelioma has been misdiagnosed as:

  • Lupus
  • Metastasis of some other cancer affecting the heart
  • Tuberculosis

Symptoms may be mistaken for:

  • Atrial myxoma (benign tumor in the heart)
  • Cardiomyopathy (enlargement of the heart)
  • Heart disease
  • Heart failure
  • Inflammation of the sac around the heart

Testicular Mesothelioma

Testicular mesothelioma has been misdiagnosed as:

  • Benign adenomatoid tumor (a form of benign mesothelioma)
  • Epididymitis (inflammation of the tube at the back of the testicle)

Symptoms may be mistaken for:

  • Scrotal or inguinal hernia
  • Spermatocele (a fluid-filled growth above or behind the testicle)

Because these cancers are very rare, doctors without mesothelioma experience may have more trouble diagnosing them. So patients should be sure to share any known history of asbestos exposure. This information can help doctors find the true cause of their symptoms.

03. Addressing Misdiagnoses

What Are the Best Ways to Deal With a Potential Mesothelioma Misdiagnosis?

Patients can take steps that may help avoid a misdiagnosis. First, patients should tell their doctors about any asbestos exposure they know or suspect they experienced. This information can help guide doctors to correct diagnoses. Depending on patients’ initial diagnoses, it may be helpful to get second opinions.

The Mayo Clinic examined the records of patients who went there for second opinions. Of those patients, 21% received a completely different diagnosis than they first had. Only 12% ended up with the same diagnosis. This study highlighted the commonplace nature of medical misdiagnosis.

Second opinions may be critical for receiving the best mesothelioma treatment. Choosing not to get a second opinion can lead to treatment complications, harm or death. Research shows roughly 795,000 Americans per year pass away or become permanently disabled because they were misdiagnosed.

Reasons a patient may want to consider getting a second opinion include:

  • If the doctor does not describe all the treatment options available
  • If the doctor says the patient does not need a second opinion
  • If the doctor says they must perform surgery the following day
  • If their pathologist or doctor cannot explain lab results in a way the patient can understand easily
  • If the patient’s insurance provider requires a second opinion

Patients may consider many of these to be red flags. Getting a second opinion may be best for their health and peace of mind.

Discuss Asbestos Exposure With Your Doctor

People who know or suspect they were exposed to asbestos should discuss it with their doctors. This information may help healthcare providers determine the true cause of symptoms. An earlier diagnosis could also lead to a better patient prognosis.

Asbestos exposure may have happened in many different places. Some places people have found asbestos include:

  • Home: Asbestos products may be in some older homes. Activities like remodeling and maintenance may cause asbestos exposure.
  • School: Older schools had asbestos. As the buildings age, asbestos fibers may be disturbed and pose an exposure risk.
  • Work: Occupational exposure happens when people work with or around asbestos.

Secondhand exposure is also a risk. It happens when friends or family who work with asbestos bring it home on their clothes or body.

04. Finding Diagnostic Experts

Where Can You Find Mesothelioma Experts for a Second Opinion?

The United States has many cancer centers with mesothelioma specialists on staff. Anyone with a non-mesothelioma diagnosis who suspects they experienced asbestos exposure can get a mesothelioma second opinion at these cancer centers.

Some notable cancer centers to consider include:

Brigham and Women’s Hospital

Brigham and Women’s Hospital

International Mesothelioma Program at The Lung Center
Boston, MA 02115

Lung Institute at Baylor College of Medicine

Lung Institute at Baylor College of Medicine

Houston, TX 77030

Washington Cancer Institute

Washington Cancer Institute

Washington, DC 20010

The University of Chicago Medicine Comprehensive Cancer Center

The University of Chicago Medicine Comprehensive Cancer Center

Chicago, IL 60637

Mount Sinai Medical Center

Mount Sinai Medical Center

Lung and Thoracic Cancer Services
New York, NY 10029

The University of Texas MD Anderson Cancer Center

The University of Texas MD Anderson Cancer Center

Thoracic Center
Houston, TX 77030

Moffitt Cancer Center

Moffitt Cancer Center

Mesothelioma Treatment and Research Center
Tampa, FL 33612

UPMC Hillman Cancer Center

UPMC Hillman Cancer Center

Mesothelioma Specialty Care Center
Pittsburgh, PA 15232

Hospital of the University of Pennsylvania

Hospital of the University of Pennsylvania

Mesothelioma and Pleural Disease Program
Philadelphia, PA 19104

University of California Los Angeles (UCLA) Medical Center

University of California Los Angeles (UCLA) Medical Center

Comprehensive Mesothelioma Program
Los Angeles, CA 90095

A second opinion may help avoid a misdiagnosis of mesothelioma.

05. Common Questions

Common Questions About Mesothelioma Misdiagnosis

How can mesothelioma be misdiagnosed?

Mesothelioma can be misdiagnosed because it shares symptoms with other diseases. Because it is rare, doctors may be unfamiliar with mesothelioma and its signs or symptoms. Patients who suspect asbestos exposure should tell their doctors. This information may help lead to a correct diagnosis.

Why should people seek a second opinion about a mesothelioma diagnosis?

A second opinion may lead to an earlier diagnosis and mesothelioma-specific treatments. Because mesothelioma shares symptoms with other conditions, a doctor may misdiagnose it. Experts say second opinions can lead to better outcomes for patients.

What is mesothelioma commonly mistaken for?

Doctors have misdiagnosed mesothelioma as other conditions found in the same body area. Some common misdiagnoses include:

  • Breast cancer
  • Bronchitis
  • Diverticulitis
  • Emphysema
  • Lung cancer
  • Pneumonia

Telling doctors about past asbestos exposure risks may lead to a more timely diagnosis.