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Mesothelioma Misdiagnosis

Malignant mesothelioma is a relatively rare cancer and may have nonspecific symptoms, so it’s often misdiagnosed as emphysema, pneumonia, lung cancer, ovarian cancer, or other health conditions. Our team can help you connect with a mesothelioma specialist, which is the best way to avoid a misdiagnosis and ensure you get the best treatment.

Medically reviewed by: Assuntina Sacco, MD

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Why Mesothelioma Is Often Misdiagnosed

A mesothelioma misdiagnosis occurs when doctors mistake signs or symptoms of this cancer for another condition. Because mesothelioma is so rare — about 3,000 Americans are diagnosed with this cancer each year — general doctors may not recognize it at first, especially if the patient doesn’t have a known history of asbestos exposure.

About 14% of all mesothelioma cases in the United States are misdiagnosed, according to the American Cancer Society Journals. This misdiagnosis percentage is closer to 25% in pleural mesothelioma cases.

Here’s how mesothelioma misdiagnoses can occur:

  • Nonspecific symptoms, like a cough or fatigue, can often be misdiagnosed as more common and less serious conditions like pneumonia or the flu.
  • When viewed under a microscope, mesothelioma cells may resemble other metastatic (advanced) cancer cells. Doctors may also misdiagnose a patient’s mesothelioma cell type if they aren’t specialists.
  • Pathologists test fluid or tissue samples using specialized “stains” to indicate whether cancer is present. However, staining patterns alone can lead to the wrong diagnosis without considering other features of the tumor and the patient’s medical history.
  • Even though CT (computed tomography) scans and X-rays are generally reliable when identifying common cancers, further testing is needed to diagnose mesothelioma because it’s so rare.

The only way to confirm a mesothelioma diagnosis is to take a biopsy of tissue or fluid and have it examined under a microscope.

Learn more about how mesothelioma is diagnosed — and how to avoid a misdiagnosis — in our Free Mesothelioma Guide, shipped for free overnight.

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What to Do If You Think You Were Misdiagnosed

If you’ve been struggling with symptoms and believe you aren’t getting the right diagnosis, it’s important to be your own advocate.

Below are some steps to consider if you think you’re facing a mesothelioma misdiagnosis.

  1. Get educated on the signs and symptoms of mesothelioma so you can share your concerns with your medical team. Request our Free Mesothelioma Guide for extensive information on this cancer.
  2. Tell your doctor if you have a known or suspected history of asbestos exposure. This can help them connect the dots between your symptoms and ultimate diagnosis.
  3. Seek out a mesothelioma specialist if you don’t have one already. A doctor experienced in diagnosing and treating mesothelioma patients can determine whether you have this rare cancer. Use our Free Doctor Match to get help finding a specialist near you.
  4. Get a second opinion if you feel your diagnosis isn’t right. An accurate mesothelioma diagnosis includes several factors, like the cancer stage and cell type, so it never hurts to get another medical opinion.
  5. Keep pushing for an answer. Your health matters most, and your medical care team is there to help you — if something feels off, you have every right to push for more testing and get the answers you deserve.

An incorrect diagnosis gives the cancer more time to spread throughout your body and delays your treatment. The sooner you’re able to start mesothelioma treatment, the better chance you have at extending or improving your quality of life.

The Importance of Getting a Second Opinion

The stories of mesothelioma survivors like Mary Jane Williams show how important it is to be persistent if you or a family member is struggling to get answers to unexplained health problems.

Mary Jane spent a year suffering from abdominal bloating, experienced a 20-pound weight loss, and was prescribed medication for gastroesophageal reflux disease (GERD). She visited several doctors before being correctly diagnosed with peritoneal mesothelioma at age 56.

“You have to just keep going until you find the answers you’re seeking. If you’re not happy with your doctor, go someplace else.”

Mary Jane Williams, 15-year mesothelioma survivor

Getting a second opinion helps you make an even more informed decision about your health and future — especially if you’ve only worked with a general oncologist (cancer doctor). A mesothelioma specialist has the experience and insights to know what to look for and get you the answers you need.

Pleural Mesothelioma Misdiagnosis

Since malignant pleural mesothelioma is a rare form of cancer, it is frequently confused with other lung-related illnesses.

Nearly 1 in 4 pleural mesothelioma patients are misdiagnosed at first, according to a report from The Open Epidemiology Journal.

Sadly, failure to diagnose pleural mesothelioma can delay treatment and affect a patient’s prognosis (health outlook).

Early-Stage Pleural Mesothelioma Misdiagnosis

A doctor reviews a chest X-ray with a mesothelioma misdiagnosis patient

In its earlier stages (stages 1 and 2), pleural mesothelioma is difficult to diagnose. It’s commonly misidentified as other respiratory conditions with similar symptoms.

Learn more about common misdiagnoses for early-stage pleural mesothelioma.

Emphysema

Emphysema occurs when the alveoli (tiny air sacs in the lungs) become damaged. Like mesothelioma, the condition gets progressively worse over time.

Emphysema is typically recognized by two common symptoms — shortness of breath and a chronic cough. These are also common symptoms of pleural mesothelioma.

Other symptoms pleural mesothelioma and emphysema share include:

  • Chest pain
  • Fatigue
  • Loss of appetite
  • Lung infections
  • Wheezing

Bronchitis and Chest Infections

Bronchitis and chest infections have many of the same symptoms as early-stage pleural mesothelioma.

Symptoms shared by all three conditions include:

  • Coughing
  • Difficulty breathing
  • Fatigue
  • Fluid build-up around the lungs (pleural effusion)
  • Fever

However, bronchitis and chest infections are typically caused by viruses. Pleural mesothelioma, on the other hand, develops when asbestos fibers cause cancerous cell mutations in the lung lining (pleura).

Chronic Obstructive Pulmonary Disease (COPD)

Early-stage pleural mesothelioma may also be mistaken for chronic obstructive pulmonary disease (COPD), a condition in which the lungs are damaged after exposure to irritants.

COPD, which is commonly associated with smoking, is characterized by a chronic, phlegmy cough nicknamed “smoker’s cough.” Chest tightness, wheezing, and shortness of breath are other common symptoms of COPD.

While smoking can certainly worsen pleural mesothelioma symptoms, the only known cause of this cancer is asbestos exposure.

Late-Stage Pleural Mesothelioma Misdiagnosis

It’s still possible for a doctor to fail to diagnose pleural mesothelioma when a patient displays late-stage (stages 3 and 4) mesothelioma symptoms or after a cancerous tumor is discovered.

In many cases, advanced-stage pleural mesothelioma is confused with a different type of cancer like lung cancer or adenocarcinoma. In some cases, it is diagnosed as pleural plaques, which are not a form of cancer but also stem from asbestos exposure.

Lung Cancer

The damage pleural mesothelioma causes to the lung, as well as the tumors that appear, can be misdiagnosed as lung cancer.

While both pleural mesothelioma and lung cancer can be treated with surgery, pleural mesothelioma is often more aggressive and may require specific supplemental treatment options, such as heated chemotherapy.

Adenocarcinoma

Adenocarcinoma is another form of cancer caused by tumors in the glands that line the lungs and other organs.

Mesothelioma behaves in a very similar manner to adenocarcinoma, which makes it possible for even experienced oncologists (cancer doctors) and surgeons to confuse the two cancers.

Pleural Plaques

People exposed to asbestos may develop pleural plaques, a noncancerous condition in which a chalky substance builds up on the pleura.

Because mesothelioma and pleural plaques are both located in the lung lining and caused by asbestos exposure, it’s possible for doctors to mistake pleural plaques for pleural mesothelioma.

However, the most notable difference is that pleural plaques are benign (harmless) and don’t cause any symptoms. Make sure to get a second opinion if doctors only find pleural plaques and you’re feeling unwell.

Learn about all the different ways mesothelioma may be misdiagnosed in our Free Mesothelioma Guide. This comprehensive book covers everything from diagnosis to treatment to help you feel informed and empowered.

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Peritoneal Mesothelioma Misdiagnosis

Peritoneal mesothelioma doesn’t have one or two obvious symptoms like pleural mesothelioma. Instead, it shares symptoms with many other illnesses, making it more likely that medical professionals might mistake it for more common illnesses or types of cancer.

Nonspecific peritoneal mesothelioma symptoms include:

  • Abdominal pain and swelling (distention)
  • Ascites (fluid buildup in abdomen)
  • Constipation
  • Fatigue
  • Nausea and vomiting
  • Night sweats
  • Weight loss

Ovarian Cancer

Peritoneal mesothelioma can be easily mistaken for ovarian cancer, as patients with both conditions often experience abdominal-related symptoms such as ascites, abdominal distention, and stomach pain.

Several female patients have been eventually diagnosed with peritoneal mesothelioma after experiencing heavy menstrual cycles and other symptoms that were inaccurately associated with ovarian cancer.

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Julie's Story

Julie Gundlach, a 17+ year survivor, visited a doctor after experiencing digestive issues and ultimately underwent surgery for a pelvic mass that was thought to be ovarian cancer. It wasn’t until after her surgery that she was diagnosed with peritoneal mesothelioma in 2006.

Other Illnesses

There are several other illnesses that peritoneal mesothelioma is commonly misdiagnosed as.

Common misdiagnoses include:

  • Irritable bowel syndrome (IBS): IBS and mesothelioma share symptoms of abdominal pain, bloating, and constipation.
  • Crohn’s disease: Crohn’s disease is an inflammatory bowel disease that causes pain and inflammation in the gastrointestinal (GI) tract, which can mimic the abdominal discomfort associated with peritoneal mesothelioma.
  • Gallstones: These solid lumps of digestive fluid form in the gallbladder and cause abdominal pain, nausea, and other symptoms similar to peritoneal mesothelioma.

If you suspect a peritoneal mesothelioma misdiagnosis or have already been diagnosed, it’s important to get a second opinion from an experienced specialist so you can start receiving proper treatment.

Importance of Avoiding a Mesothelioma Misdiagnosis

Even if a doctor identifies your condition as mesothelioma, there can still be a misdiagnosis when it comes to determining the disease stage or cell type.

Mesothelioma doctor speaking to an elderly male about their treatment plan

Treating mesothelioma at different stages requires different approaches, which means that misdiagnosing the mesothelioma stage can be just as harmful as a misdiagnosis of the disease itself.

Typically, only patients whose cancer is localized (early-stage) can undergo life-extending surgery to remove their tumors. Patients with advanced (late-stage) cancer are usually ineligible for surgeries but may be able to undergo chemotherapy, immunotherapy, or radiation.

Additionally, different mesothelioma cell types may respond differently to treatments.

Having a proper diagnosis of your mesothelioma stage and cell type helps ensure that you can access the most effective treatments. The sooner you’re able to start treatment, the better your chances of fighting this disease.

Get Help With a Mesothelioma Misdiagnosis

If you suspect you’ve been misdiagnosed, it’s critical to keep looking until you get answers. You deserve the peace of mind that comes from knowing that you’re fully informed and have all of the resources available to help you treat your illness.

You are in the driver’s seat. Resources — and the support of Patient Advocates like me and my team — are at your fingertips. I had to learn in my own life not to be afraid to ask questions and take advantage of these resources to overcome barriers to care.”

Jenna Tozzi, RN, Director of Patient Advocacy

Our team can help you:

  • Find a mesothelioma specialist
  • Understand your pathology report
  • Get a second opinion
  • Explore your treatment options

Contact us for free any time or get help right now by calling (866) 608-8933.

Mesothelioma Misdiagnosis FAQs

Can a mesothelioma diagnosis be wrong?

Because of the extensive testing needed to confirm it, it’s unlikely that your mesothelioma diagnosis is actually a different health condition — even if you don’t know where you may have been exposed to asbestos.

Many patients are surprised to find out, years later, that they were inadvertently exposed to asbestos through their job, military service, or a family member’s occupation.

If you have been diagnosed with mesothelioma, know that there is always hope. Reach out to our team any time for dedicated support, treatment information, and a listening ear.

Can mesothelioma be misdiagnosed?

Yes, mesothelioma can be misdiagnosed as bronchitis, pneumonia, a hernia, irritable bowel disease, and other types of cancer like lung cancer and ovarian cancer.

Nearly 1 in 4 pleural mesothelioma patients receive an incorrect diagnosis at first, according to a report from The Open Epidemiology Journal.

More broadly, the American Cancer Society Journals found that 14% of all mesothelioma cases are misdiagnosed in the United States and other Western countries. That rate increases to 50% in countries with less advanced health care systems.

Why is mesothelioma so hard to diagnose?

Mesothelioma is hard to diagnose for three distinct reasons:

  1. Long latency period: Mesothelioma has a long latency period, which means that the time between asbestos exposure and the development of symptoms or diagnosis can be several decades (typically 10-50 years). This delay makes it difficult for doctors to connect a patient’s symptoms with their exposure history.
  2. Non-specific symptoms: In its early stages, mesothelioma often presents with mild and non-specific symptoms, such as fatigue, chest pain, and a persistent cough. These symptoms can easily be attributed to other common conditions, leading to a mesothelioma misdiagnosis or a delayed diagnosis.
  3. Similarity to other conditions: Many of the symptoms of mesothelioma, such as pleural effusion (fluid buildup in the chest), shortness of breath, and weight loss, can be seen in other lung and respiratory conditions, making it challenging to distinguish mesothelioma from these illnesses.

What diseases mimic mesothelioma?

Many health problems can mimic mesothelioma.

  • People with pleural mesothelioma are often diagnosed with respiratory illnesses like bronchitis, chronic obstructive pulmonary disease (COPD), or lung cancer. Both conditions share symptoms like chest pain, pleural effusion (fluid around the lungs), and a recurring cough.
  • People with peritoneal mesothelioma are often misdiagnosed with irritable bowel syndrome (IBS), Crohn’s disease, and ovarian cancer. All of these conditions cause abdominal-related symptoms like swelling and constipation.

What test confirms mesothelioma?

The confirmatory test for mesothelioma is a biopsy. During a biopsy, doctors gather fluid or tissue samples to be examined under a microscope for cancer cells.

Once a diagnosis of mesothelioma is confirmed, the patient can discuss different treatment options and other health information with their doctor.

How do you rule out mesothelioma?

You should talk with a mesothelioma doctor if you have a suspected history of asbestos exposure and want to know if you’ve developed mesothelioma.

A mesothelioma specialist will know which tests can diagnose or rule out this cancer. These tests will include imaging scans along with a biopsy, which is the only way to confirm a mesothelioma diagnosis.

Use our Free Doctor Match service for help finding a mesothelioma specialist near you.

Dr. Assuntina SaccoReviewed by:Assuntina Sacco, MD

Board-Certified Oncologist

  • Fact-Checked
  • Editor

Assuntina Sacco, MD is an Associate Professor of Internal Medicine at the University of California, San Diego (UCSD) Moores Cancer Center, where she also serves as the Medical Director of Infusion Services. She is a board-certified medical oncologist trained to treat all solid tumor types, with the use of chemotherapy, immunotherapy, targeted therapy, and clinical trials.

Dr. Assuntina Sacco is an independently paid medical reviewer.

  • Board-Certified Oncologist
  • Associate Professor at UC San Diego
  • Published Medical Author
Jenna TozziWritten by:

Director of Patient Advocacy

Jenna Tozzi, RN, is the Director of Patient Advocacy at Mesothelioma Hope. With more than 15 years of experience as an adult and pediatric oncology nurse navigator, Jenna provides exceptional guidance and support to mesothelioma patients and their loved ones. Jenna has been featured in Oncology Nursing News and is a member of the Academy of Oncology Nurse & Patient Navigators & the American Nurses Association.

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References
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  2. Drevinskaite, M., Patasius, A., Kevlicius, L. et al. Malignant mesothelioma of the tunica vaginalis testis: a rare case and review of literature. BMC Cancer 20, 162 (2020). Retrieved July 16, 2024, from https://doi.org/10.1186/s12885-020-6648-3
  3. Framarino-dei-Malatesta M, Sammartino P, Derme M, Iannini I, Masselli G, Pecorella I. Breast cancer or metastasis? An unusual case of metastatic malignant pleural mesothelioma to the breast. World J Surg Oncol. 2015 Feb 25;13:79. Retrieved July 16, 2024, from doi: 10.1186/s12957-015-0491-z
  4. Frontiers in Genetics. (n.d.). Tumors that mimic asbestos-related mesothelioma: time to consider a genetics-based tumor registry? Retrieved July 16, 2024, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4038924/
  5. Hancock KL, Clinton CM, Dinkelspiel HE, Saab J, Schneider B, Caputo TA. A case of mesothelioma masquerading pre-operatively as ovarian cancer and brief review of the literature. Gynecol Oncol Rep. 2016 Apr 26;17:26-8. Retrieved July 16, 2024, from doi: 10.1016/j.gore.2016.04.003
  6. Kopylev, L., Sullivan, P., & Et al. (n.d.). Monte Carlo Analysis of Impact of Underascertainment of Mesothelioma Cases on Underestimation of Risk. Retrieved July 16, 2024, from https://benthamopen.com/contents/pdf/TOEPIJ/TOEPIJ-4-45.pdf
  7. Penn Medicine. “Mesothelioma Diagnostic Tools and Tests.” Retrieved July 16, 2024, from https://www.pennmedicine.org/cancer/types-of-cancer/mesothelioma/mesothelioma-diagnosis/mesothelioma-diagnostic-tools#
  8. Savarrakhsh, A., Vakilpour, A., Davani, S.ZN. et al. Malignant primary pericardial mesothelioma presenting as effusive constrictive pericarditis: a case report study. J Cardiothorac Surg 16, 298 (2021). Retrieved July 16, 2024, from https://doi.org/10.1186/s13019-021-01684-8
  9. Wang, L., Zhang, J., Chen, X., Liang, M., Li, S., Zhou, W., & Cao, J. (2021, November 12). Pulmonary sarcomatoid carcinoma mimicking pleural mesothelioma: A case report. Retrieved July 16, 2024, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8589231/
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