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Vanessa Blanco, patient advocate for the Mesothelioma Prognosis Network
Written By Vanessa Blanco
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Why is Mesothelioma Commonly Misdiagnosed?

When mesothelioma is diagnosed at an early stage, before the cancer has time to invade lymph nodes and other parts of the body, treatment is more effective and the prognosis is most promising. But the disease is rarer than other cancers, with only about 3,000 cases diagnosed in the U.S. annually. Most doctors — including oncologists — will never attend to a mesothelioma patient in their career.

If you have a history of asbestos exposure and your cancer care team lacks experience with the complexities of diagnosing mesothelioma, you are more likely to receive an incorrect diagnosis. Even worse, your doctors could start treatment for a cancer or condition you don’t actually have.

A misdiagnosis can delay proper treatment, limiting the treatment options available to you and reducing their effectiveness. For a cancer as aggressive as mesothelioma, there is no time to waste.

Fortunately, specialists well-versed in the latest breakthroughs in detecting and treating mesothelioma are helping patients improve their outcomes nationwide. When you seek the help of an expert, you’re much more likely to receive a prompt and accurate diagnosis that will get you personalized treatment as soon as possible.

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Diagnostic Challenges

There are four distinct types of mesothelioma, each forming in a different part of the body. While each type has unique characteristics that affect treatment and life expectancy, they all have one thing in common: Diagnosis is always a challenge.

No matter the type, mesotheliomas have nonspecific symptoms that can be caused by many conditions, including other cancers and less serious illnesses. Because mesothelioma is so rare, nonspecialists tend to misdiagnose patients with a more common disease.

Mesothelioma patients typically receive a diagnosis two to three months after first noticing symptoms, but in many cases a misdiagnosis causes a delay of up to six months.

Common Misdiagnoses

Once your doctor confirms a mesothelioma diagnosis, a team of specialists will build a treatment plan that offers the best chance of improving your prognosis and quality of life. Currently, the most effective and reliable treatments include surgery, chemotherapy and radiation therapy. You may even qualify for experimental therapies offered in clinical trials.

Pleural Mesothelioma

Pleural mesothelioma is the most commonly diagnosed type, comprising about 75 percent of all cases. It forms on the mesothelial lining of the lungs, known as the pleura.

Pleural mesothelioma symptoms include:

  • Chest pain
  • Persistent cough
  • Shortness of breath
  • Difficulty swallowing

May be misdiagnosed as:

  • Pneumonia/pneumonitis
  • Tuberculosis
  • Synovial sarcomatoid carcinoma
  • Metastatic melanoma
  • Thymoma

Peritoneal Mesothelioma

Peritoneal mesothelioma symptoms include:

  • Abdominal pain
  • Abdominal swelling
  • Nausea / vomiting
  • Weight loss

May be misdiagnosed as:

  • Primary peritoneal carcinoma
  • Ovarian carcinoma
  • Colorectal adenocarcinoma

Pericardial Mesothelioma

Pericardial mesothelioma represents about 1 percent of all diagnoses. This type forms on the mesothelial lining of the heart, known as the pericardium.

Pericardial mesothelioma symptoms include:

  • Chest pain
  • Persistent cough
  • Irregular heartbeat
  • Difficulty breathing

May be misdiagnosed as:

  • Tuberculous pericarditis
  • Mesothelial reactive hyperplasia
  • Leiomyosarcoma
  • Fibrosarcoma
  • Rhabdomyosarcoma

And it’s not only symptoms that complicate diagnosis. Even imaging scans can be misleading to doctors. In a case report on a U.S. Navy veteran with a history of asbestos exposure, doctors told the patient he might have pleural mesothelioma after a chest X-ray revealed a growth on the lining of his lungs. However, a tissue sample of the growth from a procedure called a biopsy came back negative for cancer. Doctors diagnosed the patient with inflammation of the lung tissue, called pneumonitis.

This example highlights the importance of finding a specialist who understands that many diseases may appear to be mesothelioma on an imaging scan. Even if a patient has a history of asbestos exposure and is experiencing symptoms consistent with mesothelioma, doctors must perform a biopsy and other tests to confirm a diagnosis of mesothelioma.

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How to Avoid a Mesothelioma Misdiagnosis

One of the most important steps you can take to avoid a misdiagnosis is finding a qualified mesothelioma doctor. It takes an experienced doctor to recognize that a patient’s symptoms, imaging scans and work history suggest mesothelioma.

  • Explain Past Exposure
    If you have a history of asbestos exposure, tell your primary care doctor as much as you can about your past exposures to help avoid a misdiagnosis. Asbestos-related diseases can take decades to develop, so it's okay if you can't remember everything.
  • Share Your Work History
    It's most important to tell your doctor about your work history, when you were exposed to asbestos and the duration and extent of your exposures. Sharing this information is crucial. Otherwise, your doctor might not immediately suspect mesothelioma.
  • Ask About Experience
    If your doctor does say that you might have mesothelioma, you should find out how much experience he or she has diagnosing and treating the disease. Be sure to ask how many mesothelioma patients they have treated, and what therapies the treatment center can provide.
  • Get a Second Opinion
    If you’re uncomfortable with your doctor’s level of experience, ask if they can recommend a specialist, or find one on your own for a second opinion.

A qualified mesothelioma specialist has the knowledge and resources to confirm your diagnosis with certainty. Experts in asbestos-related disease will likely detect the cancer sooner than nonspecialists, and that will help you get the treatments you need early on when they are most effective.