This page has been fact-checked by a Doctor of nursing practice specializing in Oncology and has experience working with mesothelioma patients.
Sources of information are listed at the bottom of the article. We make every attempt to keep our information accurate and up-to-date.
Please Contact Us with any questions or comments.
Mesothelioma misdiagnosis is unfortunately common because this cancer is difficult to diagnose. The symptoms are similar to less serious illnesses, and biopsied cells examined by pathologists often resemble those of other cancer types. Getting an accurate diagnosis is essential for timely treatment.
Is Mesothelioma Misdiagnosed?
Yes, mesothelioma is often misdiagnosed. The main reason mesothelioma patients get misdiagnosed is that it is a very rare cancer. Most doctors don’t consider mesothelioma as an option until they have eliminated other common illnesses and cancer types.
Even then, they might still misdiagnose mesothelioma due to several factors. One of the most important things you can do when getting evaluated for symptoms is to inform your doctor of any past asbestos exposure.
Why Is Mesothelioma Difficult to Diagnose Accurately?
Lapse Between Asbestos Exposure and Symptoms
Another issue is the latency period. The time between initial exposure to asbestos and a confirmed diagnosis of mesothelioma is called the latency period. The average latency period for mesothelioma is several decades.
Asbestos fibers lodged in the mesothelium cause damage over time, but symptoms may not present for twenty years or more. Trying to diagnose mesothelioma so long after exposure is challenging.
Commonality of Symptoms
Confusing symptoms also make mesothelioma tough to diagnose. When a doctor sees someone with symptoms like chest pain, cough, and difficulty breathing, they are likely to suspect more common conditions.
Even if the doctor suspects cancer, the signs of mesothelioma mimic those of lung cancer, which is more common.
Issues with Diagnostic Tests for Mesothelioma
More detailed diagnostic tests like CT, MRI, and PET scans cannot definitively diagnose mesothelioma. Images of mesothelioma tumors can look like lung cancer.
Even a biopsy of the tumor cells is an imperfect tool because the cells of mesothelioma tumors look similar to other types of cancer cells. If the biopsy does not have enough mesothelioma cells, it can be challenging for your medical team to give you a firm diagnosis.
What Mimics Mesothelioma?
Because it is rare, difficult to diagnose, and has symptoms that mimic other conditions, mesothelioma is often misdiagnosed.
Symptoms like a persistent cough, shortness of breath, and chest pain for pleural mesothelioma can lead to a misdiagnosis. Likewise, abdominal pain, stomach upset, diarrhea, and cramping for peritoneal mesothelioma can have the same result.
Pleural mesothelioma is often misdiagnosed as an upper respiratory infection and similar types of cancer:
Pneumonia is an infection that occurs in the lungs and that can persist for a long time. Its most characteristic symptoms—coughing, chest pains, and difficulty breathing—are very similar to those of pleural mesothelioma.
Bronchitis is an airway infection that also causes symptoms like those of pleural mesothelioma: coughing, phlegm production, and shortness of breath
Chronic obstructive pulmonary disorder (COPD) is a chronic illness most often caused by smoking. It usually includes two illnesses: bronchitis and emphysema. Emphysema is damage to air sacs in the lungs. It causes shortness of breath as the main symptom.
Pulmonary fibrosis is scarring in the lungs that thickens the tissue making it more difficult for them to expand when breathing. This causes shortness of breath that gets progressively worse. It can also cause coughing and fatigue.
This is a type of unusual growth of cells in the mesothelium. Unlike mesothelioma, it is benign, but initially, the growth might seem like cancer.
Even when doctors and oncologists diagnose cancer, it is easy to misdiagnose mesothelioma as a type of lung cancer. Lung cancer causes similar symptoms and is much more common.
Peritoneal mesothelioma also mimics several other more common illnesses and cancer types:
Irritable Bowel Syndrome
Like peritoneal mesothelioma, IBS can cause several gastrointestinal symptoms. These include bloating, abdominal pain, diarrhea, and constipation. There is no definitive diagnosis for IBS, so doctors often rely mostly on symptoms.
Colitis and Crohn’s Disease
These are both inflammatory bowel diseases that cause more severe symptoms than IBS. The gastrointestinal distress can be debilitating and may even lead to malnutrition, weight loss, perforated colon, severe dehydration, and intestinal blockages.
In women, ovarian cancer is a common misdiagnosis for peritoneal mesothelioma. It causes bloating and swelling, weight loss, fatigue, and gastrointestinal symptoms.
Although it is very rare, pericardial mesothelioma may also be misdiagnosed as heart disease or heart failure.
Can Mesothelioma Be Caused by Something Other Than Asbestos?
Asbestos is one of the best clues that a patient with the right symptoms and signs of malignancy might have mesothelioma. It is possible but rare for mesothelioma to be caused by anything other than asbestos.
A bigger problem is that some people might be unaware they encountered asbestos in the past. If they don’t know about it, they cannot tell their doctors to improve the accuracy of a diagnosis.
This might happen when a family member experienced secondhand exposure. If someone in their household worked around asbestos, they might have brought fibers home on clothing or in their hair.
Another source of exposure is the environment, including natural deposits, mines, and nearby industrial sites that used asbestos.
Misdiagnosis of Stage
Not only may the type of cancer be misdiagnosed, but it is also possible for a doctor to misdiagnose the stage of mesothelioma. Doctors give mesothelioma a diagnosis with stages 1, 2, 3, or 4 based on specific criteria.
Staging is assigned based on the extent of the original tumor’s growth and its spread to other parts of the body. Doctors use imaging scans, biopsies, and blood tests to make this staging diagnosis, but many of these tests can be misleading, and it is easy to miss part of the tumor that has spread.
The Importance of Diagnosis for Treatment
An accurate diagnosis for any health condition is crucial for getting the right treatment. A correct diagnosis becomes even more critical with a disease like mesothelioma that can be fatal when treatment is delayed.
Although mesothelioma is challenging to treat, the earlier an accurate diagnosis is made, the better the prognosis.
An early and accurate diagnosis gives patients more treatment options. This is true for the diagnosis of the condition itself as well as the stage. A medical team needs accurate information to develop the best treatment plan.
For example, if mesothelioma is misdiagnosed for several years, by the time the patient receives a proper diagnosis, there may only be aggressive treatments available. If a diagnosis had been made sooner, that patient might have benefited from less invasive treatments.
Why Getting a Second Opinion Is So Important
Because an early and accurate diagnosis leads to the best treatment options, getting a second opinion can be the difference between life and death. All patients should feel supported to get a second opinion and encouraged in cases where the diagnosis might be unclear.
A recent study looked at rates and outcomes of second opinions for various medical problems. In 15% of cases, the diagnosis was changed, and treatment was changed in 37% of the patients.
It may seem like you are insulting your doctor if you seek a second opinion, but that is not the case. Good physicians know the importance of having expert opinions. Every health care consumer has a right to getting as much information as possible.
For mesothelioma, at least one diagnosis should come from a doctor specializing in this type of cancer. Since mesothelioma is a serious condition, a second opinion could make a huge difference in treatment options and life expectancy.
Finding a Mesothelioma Specialist
If you suspect you have mesothelioma and are dissatisfied with your current diagnosis, seeing a mesothelioma specialist should be your next step. There are few mesothelioma specialists in comparison to other doctors. This is because the disease is so rare.
Start with a recommendation from your doctor or oncologist. You can also look into cancer care centers. If you are a veteran, you can seek help from a VA medical center. A second opinion is important, so don’t neglect this crucial step.Get Your FREE Mesothelioma Packet
Page Medically Reviewed and Edited by Anne Courtney, AOCNP, DNP
Anne Courtney has a Doctor of Nursing Practice degree and is an Advanced Oncology Certified Nurse Practitioner. She has years of oncology experience working with patients with malignant mesothelioma, as well as other types of cancer. Dr. Courtney currently works at University of Texas LIVESTRONG Cancer Institutes.