How Is Mesothelioma Diagnosed?
Mesothelioma is most effectively diagnosed by a specialist who understands the nuances of this rare cancer and what to look for. However, most people start with their primary care doctor to rule out more common conditions, especially considering that many of the early symptoms of mesothelioma are not specific.
When establishing a diagnosis for mesothelioma, your doctor will want to understand if there’s cancer present, where it started, and whether it’s spread to other parts of the body.
The basic steps for a mesothelioma diagnosis include:
- Symptom evaluation. During your initial exam, the doctor will ask about your symptoms to get a full picture of your health. It’s important that you share everything you’ve noticed, such as fatigue, weight changes, pain, and any respiratory changes.
- Medical and personal history. Your doctor will also want to know about your medical history, including any existing health conditions and risk factors, like whether you might have been exposed to asbestos (the only known cause of mesothelioma).
- Testing. Depending on your symptoms, your doctor may order blood tests and imaging scans to look inside your lungs and abdomen. These tests help them narrow down possible causes.
- Biopsy. During a biopsy, you’ll have fluid or tissue samples removed from your body, and a pathologist (a type of doctor who studies diseases) will examine them under a microscope for cancerous cells.
- Staging and cell type. If your doctor finds mesothelioma, they will also want to understand what stage the cancer is in and what cell type is present. This helps your care team develop a personalized treatment plan.
This is the standard process for patients who go to the doctor with specific symptoms to address. Some patients are also diagnosed with mesothelioma during surgery or treatment for another condition.
If you’re looking for a doctor who can help with diagnosing mesothelioma, offering a second opinion, or developing a care plan for you or a loved one, use our Free Doctor Match to find a specialist near you.
Common Mesothelioma Test Types
Because the symptoms of mesothelioma are vague (meaning they could be caused by a number of different illnesses), your doctor will likely need to perform multiple tests to narrow down what’s going on. The medical diagnostic process is set up in tiers, with progressively more invasive or expensive tests if findings are abnormal or suggest the need for further evaluation. Many patients may see multiple different types of doctors before determining the need for a mesothelioma specialist.
Physical Exam and Medical History
The initial consultation step of the diagnostic process includes a thorough physical examination and a detailed medical history. During the exam, your doctor will check for any noticeable abnormalities, like lumps or swelling.
When discussing your medical history, your doctor will want to know about all of your symptoms and concerns, any existing conditions, and possible risk factors for various illnesses. It’s important during this step to share any known or suspected history of asbestos exposure.
Even if you don’t know for sure if you were exposed, if you have any suspicions that you were, it’s worth mentioning to help give your doctor a full picture of your history and where to look next.
”Getting a mesothelioma diagnosis can be very scary. So many people go on Google and find either misinformation or information that doesn’t apply to their individual situation. Mesothelioma is not a guaranteed death sentence — there are options that you have.”
Blood Tests and Biomarkers
Your doctor may order blood tests to check your kidney and liver function, as well as your red and white blood cell counts. Mesothelioma increases the levels of certain proteins and molecules in the blood, such as fibulin-3 and soluble mesothelin-related peptides (SMRPs). These substances can be detected through various mesothelioma blood tests as ordered by your oncology (cancer) doctor.
Specific types of mesothelioma blood tests include:
- SMRP test. The most common mesothelioma blood test is the SMRP test (MESOMARK®). This test looks for heightened levels of SMRPs, substances that develop in the blood if mesothelioma cells are present.
- N-ERC test. This test can determine if a substance called N-ERC (mesothelin) is present in the patient’s blood. While the N-ERC test is more accurate than the MESOMARK test, it’s less effective at ruling out mesothelioma since it can detect a variety of other cancers.
- Osteopontin test. Osteopontin is a naturally occurring protein that increases when a person has mesothelioma. An osteopontin mesothelioma blood test can determine whether a patient has cancer, but does not indicate what type.
- MPF test. This can detect megakaryocyte potentiating factor (MPF), a protein found in the blood of mesothelioma patients.
Mesothelioma can’t be diagnosed with blood tests alone, so they’re used less frequently by specialists than imaging scans and biopsies.
Imaging Scans
Doctors use imaging scans to get an internal view of your body, seeing where possibly cancerous fluids, tumors, or masses have formed. Some of these tests provide anatomical views, allowing doctors to see the size and location of a potential tumor, while others provide a look at the behavior of cells within the body.
Common types of imaging scans include:
- X-rays. An X-ray uses electromagnetic radiation to create a picture of the inside of the body. According to the American Cancer Society (ACS), X-rays are typically the first test a doctor will order for pleural mesothelioma.
- CT scans. A computed tomography (CT) scan creates a more detailed and comprehensive image of the body than an X-ray to locate potentially cancerous growths.
- MRI scans. A magnetic resonance imaging (MRI) scan is similar to a CT scan, but it uses radio waves and magnets instead of X-rays to highlight possible tumors.
- PET scans. A positron emission tomography (PET) scan uses a low dose of radioactive sugar to detect cancer cells. Your doctor may use this scan to see if the cancer has spread to your lymph nodes or other parts of the body.
Biopsies
The only way to confirm a diagnosis of malignant mesothelioma is through a biopsy. A mesothelioma biopsy involves collecting a tissue or fluid sample from a possibly cancerous growth. The sample is then examined under a microscope for cancer cells. Fluid may be drawn from around the lungs or abdomen, but the ACS notes that doctors usually need a tissue sample to definitively diagnose mesothelioma.
The most common types of mesothelioma biopsies include:
- Thoracoscopy. Doctors create a small incision in the chest and use VATS (video-assisted thoracoscopic surgery) to extract a biopsy sample. A thoracoscopy is highly accurate and is one of the preferred methods of diagnosing malignant pleural mesothelioma.
- Fine needle biopsy. A fine needle biopsy collects sample cells using a long and skinny needle. Doctors can use it to access hard-to-reach locations in the body, such as the lungs and the heart.
Asking the right questions can make a big difference when meeting with a mesothelioma specialist. Download our Free Checklist of 14 Questions to Ask your Doctor to get the answers you need to make informed decisions about your care.
Challenges With Getting a Mesothelioma Diagnosis
Many patients struggle to get an accurate mesothelioma diagnosis. It’s a very rare cancer, and it can take decades to develop after asbestos exposure. Primary care and general oncologists may lack experience with mesothelioma, so they may not be aware of the need to test for it.
Some of the biggest challenges include:
- Latency period. It can take 10-50 years after asbestos exposure before noticeable symptoms of mesothelioma appear. This long latency period (the time between asbestos exposure and a malignant mesothelioma diagnosis) means that patients may not even remember being exposed to asbestos-containing products.
- Lack of specialization. Mesothelioma is a very rare cancer, and many doctors don’t know how to diagnose and treat it. This can make the diagnosis process much longer, as they don’t know which tests to order and how to quickly determine what’s going on.
- Nonspecific symptoms. In many cases, early signs of mesothelioma are brushed off as the flu or allergies. Patients may not suspect that their relatively mild symptoms could be caused by mesothelioma, and don’t know to get checked out until their symptoms worsen.
Mesothelioma Misdiagnosis
A mesothelioma misdiagnosis can occur when mesothelioma is incorrectly diagnosed as another condition or when the stage or cell type is incorrect. The two most common types of mesothelioma are pleural mesothelioma, which affects the lining of the lungs, and peritoneal mesothelioma, which starts in the lining of the abdomen. Both types are often mistaken for other common illnesses with similar symptoms.
Mesothelioma may be misdiagnosed as:
- Bronchitis
- Coronary artery disease
- Chronic obstructive pulmonary disease (COPD)
- Crohn’s disease
- Emphysema
- Irritable bowel syndrome (IBS)
- Testicular infection
- Other forms of cancer, like lung cancer
Getting a second opinion from an experienced specialist can help ensure you have the correct mesothelioma diagnosis. That means not only determining whether the cancer is present, but also identifying the stage and cell type. A specialized mesothelioma doctor can also help ensure you receive the most effective treatments based on this information.
“One of the most important things I tell patients is to find a doctor who truly specializes in mesothelioma at a facility that treats many cases per year. Experience matters when it comes to mesothelioma.”
Mesothelioma Diagnosis Stories
Each person’s medical journey is unique, but hearing how other mesothelioma patients were diagnosed can help you see the different paths to treatment.
Below, learn what symptoms led three mesothelioma patients to seek medical care, the tests they underwent, and how they were diagnosed.
John Stahl
- Initial symptoms: Fatigue, shortness of breath, feeling off
- Appointments: Urgent care center, primary care visit, and then referred to an oncologist
- Tests: X-ray of lungs followed by CT scan
John was diagnosed with stage 4 pleural mesothelioma. Read John’s full story here.
Alexis Kidd
- Initial symptoms: Abdominal pain
- Appointments: Unrelated gallbladder surgery
- Tests: Tissue biopsy from diaphragm
Alexis was diagnosed with peritoneal mesothelioma. Read Alexis’s full story here.
John Panza
- Initial symptoms: Flu-like symptoms
- Appointments: Doctor visit and two thoracentesis procedures to remove fluid around the lungs that kept returning
- Tests: Chest X-ray, which found pleural effusions (fluid collection), followed by VATS (video-assisted thoracoscopic surgery)
John was diagnosed with stage 3 pleural mesothelioma. Read John’s full story here.
What to Do After a Mesothelioma Diagnosis
If you or a loved one were diagnosed with mesothelioma, take a moment to process this news and your feelings — you won’t solve everything right away. It’s important to understand your diagnosis and determine what steps to take to get the treatment you need.
A few things to consider after a mesothelioma diagnosis include:
- Getting a second opinion
- Finding a mesothelioma specialist who can develop a custom treatment plan for you
- Asking about alternative treatments and clinical trials
”If there’s a wait to see a mesothelioma specialist, take that time. Take that time to get your nutrition in check. Take that time to do all the things you need to do at home. Don’t focus on the wait time because your cancer’s not inside you going crazy in that one-month or six-week time frame.”
It can also be helpful to join a support group or connect with a therapist to help you navigate the mental and emotional aspects of a mesothelioma diagnosis and treatment.
Get Help With a Mesothelioma Diagnosis
Wherever you are in your mesothelioma journey, you are not alone. Mesothelioma Hope is committed to walking alongside you every step of the way.
Our Patient Advocates are here to:
- Connect you with a mesothelioma specialist for a diagnosis or a second opinion
- Empower you with information and questions to ask your cancer care team
- Help you navigate your insurance to understand what tests will be covered
- Walk you through what to expect during different scans and procedures
Call us any time at (866) 608-8933 or use our Free Doctor Match service to get started.
Diagnosing Mesothelioma FAQs
How do I know if I have mesothelioma?
The only way to know for sure whether you have mesothelioma is to get diagnosed by a mesothelioma doctor.
Mesothelioma testing includes imaging scans like X-rays and CT scans, biopsies, and blood tests.
If you’re experiencing mesothelioma symptoms or suspect that you were exposed to asbestos, you should reach out to a doctor right away for a physical examination.
Can mesothelioma be diagnosed without a biopsy?
No. While doctors may suspect mesothelioma based on symptoms, scans, or blood tests, they can’t diagnose mesothelioma without a biopsy.
The diagnostic process usually starts with a physical exam and may include imaging tests (like X-rays, CT scans, or MRIs) and bloodwork. These steps give doctors important clues about what’s happening in your body and whether mesothelioma might be present.
However, only a biopsy can confirm the disease. This test allows specialists to see cancer cells directly, confirm mesothelioma, and determine the exact cell type.
How do you test for mesothelioma?
Doctors can use several mesothelioma testing methods to make a diagnosis, often starting with a physical exam and imaging scans like X-rays, CT scans, MRIs, or PET scans. These tests help show areas with potential tumors or fluid buildup.
A biopsy provides the clearest proof of malignant mesothelioma because doctors can see cancer cells under a microscope. During this procedure, doctors remove a small sample of tissue or fluid, and a pathologist examines it under a microscope for cancer cells.
Can a chest X-ray show mesothelioma?
Yes, chest X-rays may be one of the first tests used to diagnose pleural mesothelioma.
Chest X-rays can show:
- Calcium deposits in the pleura (pleural plaques)
- Fluid buildup in the lungs (pleural effusion)
- Thickening of the lining of the lungs or abdomen
- Other abnormalities that may indicate mesothelioma
While an X-ray can help identify the need for further testing, a biopsy is the only way to confirm a mesothelioma diagnosis.
Why is mesothelioma so hard to diagnose?
There are some unique challenges to diagnosing mesothelioma, such as the long latency period between asbestos exposure and symptoms; the rarity of the disease; and the way its symptoms are nonspecific and can be mistaken for other illnesses. However, a skilled specialist will know what tests to run to get you the answers you need.
If you think you might have been misdiagnosed, you should get a second opinion from a specialist.
What should I do if I think I was misdiagnosed?
You should get a second opinion if you believe you were misdiagnosed. An accurate diagnosis is crucial to ensure you get the treatment you need to improve your life expectancy.
Use our Free Doctor Match to find a specialist near you who can evaluate your mesothelioma cancer diagnosis.
What is the average age of mesothelioma diagnosis?
According to the American Cancer Society, the average age of people diagnosed with pleural mesothelioma is 72 years old. Because the disease can take decades to develop, many people aren’t diagnosed until later in life.
However, many people have also been diagnosed in their 40s and 30s or even younger — it’s important to see a specialist if you’re having any concerning symptoms.
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