Why Mesothelioma Is Misdiagnosed
A mesothelioma misdiagnosis happens when doctors mistake the signs or symptoms of this rare cancer for another condition. Because only about 3,000 Americans are diagnosed with mesothelioma each year, many doctors, especially those who don’t specialize in cancer, may not recognize it right away. This is even more likely if the patient doesn’t have a known history of asbestos exposure, which is the only known cause of this cancer.
According to the American Cancer Society Journals, about 14% of all mesothelioma cases are misdiagnosed. For pleural mesothelioma, that number is closer to 25%.
Here are the most common reasons mesothelioma is misdiagnosed:
- Similarities to other cancers: Under a microscope, mesothelioma cells can look similar to other cancer cells, including lung cancer. Doctors who aren’t familiar with mesothelioma can misdiagnose the exact cell type.
- Testing limitations: Pathologists use special stains to test tissue and fluid samples from a biopsy. But staining alone can be misleading if doctors don’t also review the patient’s medical history and tumor features.
- Vague symptoms: Early warning signs like fatigue, coughing, and shortness of breath are easy to confuse with more common conditions such as pneumonia, COPD, or the flu.
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.
What to Do if You Think You Were Misdiagnosed
If you’ve been struggling with symptoms and don’t think you’re 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.
- Get educated on the signs and symptoms of mesothelioma so you know when to get checked out and share your concerns with your medical team. Request our Free Mesothelioma Guide for extensive information on this cancer.
- 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.
- 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 and identify specifics to inform your treatment plan. Use our Free Doctor Match to get help finding a specialist near you.
- 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 a second medical opinion.
- 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 delays your ability to get proper treatment, giving the cancer more time to spread throughout your body. Getting treatment as early as possible gives you a better chance to live longer and maintain a good 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.
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.
“One of the most important things I tell patients is to find a doctor who really knows mesothelioma. Look for someone at a cancer center who sees a lot of cases every year. Experience makes a big difference.”
Pleural Mesothelioma Misdiagnosis
Pleural mesothelioma is rare, and doctors sometimes confuse it with other lung problems. A study in The Open Epidemiology Journal found that about 1 in 4 patients are first given the wrong diagnosis. This can delay treatment and make it harder to manage the disease effectively.
Early-Stage Pleural Mesothelioma Misdiagnosis
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 buildup 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 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.
Pleural plaques are not cancer and usually don’t cause any health problems, but they do show that you were exposed to asbestos in the past. Because asbestos exposure is the only known cause of mesothelioma, it’s important to take this seriously. If plaques are found, consider getting a second opinion from a specialist to rule out mesothelioma.
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.
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 will mistake it for more common illnesses or types of cancer.
Nonspecific peritoneal mesothelioma symptoms include:
- Abdominal pain and swelling (distention)
- Ascites (fluid buildup in the 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.
Julie Gundlach, a 19+ 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.
Other Illnesses
There are several other illnesses that peritoneal mesothelioma is 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.
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.
“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.”
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.
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 Misdiagnosed FAQs
Can mesothelioma be wrongly diagnosed?
Yes, it can. Mesothelioma is rare, and its early symptoms often look like much more common conditions. Many people are first told they have pneumonia, bronchitis, or COPD because the signs overlap so closely.
When treatments for those problems don’t work, doctors may order more scans or a biopsy, which is usually when mesothelioma is discovered. This is why getting a second opinion can be so important.
What cancer mimics mesothelioma?
The cancer that most often resembles mesothelioma is lung cancer, especially when it spreads to the lining around the lungs. Other cancers, like those that start in the breast, ovaries, or digestive system, can also spread to the chest or abdomen and look very similar.
Even under a microscope, these cancers can be hard to tell apart. That is why doctors often use special lab tests that look for certain proteins in the tumor cells to confirm whether it is mesothelioma.
Is mesothelioma difficult to diagnose?
Yes. Mesothelioma is hard to diagnose for three distinct reasons:
- 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.
- 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.
- 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.
Can mesothelioma be misdiagnosed as COPD?
Yes. Chronic obstructive pulmonary disease (COPD) causes coughing, shortness of breath, and fatigue. These are also frequent signs of pleural mesothelioma.
Because COPD is such a common illness, doctors may assume it’s the cause of breathing problems. The main difference is that COPD affects the airways, while mesothelioma affects the lining around the lungs.
Why is mesothelioma so hard to diagnose?
Because the symptoms look so much like other illnesses, many people with mesothelioma are first told they have ovarian cancer, irritable bowel syndrome, COPD, pneumonia, or heart disease. Most doctors don’t suspect mesothelioma at first because it’s so rare.
Another difficulty is that mesothelioma cannot be confirmed with a basic scan or blood test. X-rays and CT scans may reveal fluid or tumors, but those results could point to many different diseases. These challenges are why mesothelioma misdiagnosis is common and why the cancer is commonly found in the later stages.
If you want peace of mind, we can help you find a mesothelioma specialist who has experience diagnosing and treating this rare cancer. Use our Free Doctor Match to get started.
Can mesothelioma be mistaken for something else?
Yes. Mesothelioma may be confused with pneumonia, COPD, asthma, lung cancer, or even heart problems like congestive heart failure. All of these conditions can cause chest pain, coughing, or fluid around the lungs.
To be certain it’s mesothelioma, doctors usually need to analyze fluid or tissue samples in addition to imaging tests.
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