Pleural Mesothelioma

What Is Pleural Mesothelioma?

Pleural mesothelioma is a very rare type of cancer that grows on the pleura. This is the thin membrane covering your lungs and lining your chest cavity. The main cause of pleural mesothelioma is asbestos exposure. When asbestos fibers are inhaled, they can become stuck in the pleura, causing inflammation.

Because it’s so rare, patients have sometimes never heard of it before receiving a pleural mesothelioma diagnosis. Doctors in the U.S. only diagnose under 3,000 new cases of pleural mesothelioma each year. Jeanne Niemiec, whose husband Bob received a pleural mesothelioma diagnosis in 2019, tells us, “We had no idea what it was. I’d never even heard of it before, and neither had Bob or our kids.”

Key Characteristics of Pleural Mesothelioma

1. Asbestos can irritate cells, eventually causing this cancer to develop over a period of 20 to 60 years after exposure.
2. Pleural mesothelioma tumors typically look like plaques or nodules at first.
3. These tumors can sometimes look like other cancers, such as lung cancer, making accurately identifying them challenging.
4. As pleural mesothelioma progresses, tumors can merge to form a sheet-like mass.

Your pleura, also known as the pleural membrane, protects your lungs. It helps your lungs move smoothly when you’re breathing. Pleural mesothelioma can affect how your pleura works, causing it to thicken or build up fluid. This can make breathing difficult and painful. 

While this cancer is very rare, it’s the most common of the 4 different types of mesothelioma. Pleural mesothelioma makes up 70% to 79% of all cases of mesothelioma. It’s a malignant cancer, which means it’s aggressive and can spread to other parts of your body. 

What Causes Pleural Mesothelioma?

Inhaling asbestos fibers is the primary cause of pleural mesothelioma. These microscopic fibers are sharp and pointed like needles. They can become stuck in your body’s tissues, irritating them over time and causing scar tissue to form.

We asked Dr. Jacques Fontaine, director of the Mesothelioma Research and Treatment Center at Moffitt Cancer Center, to explain how asbestos exposure leads to pleural mesothelioma. He said, “Inhaled asbestos fibers can go to the [edges] of the lung and start causing inflammation. Over many years, it can turn into pleural mesothelioma.”

Over many decades, the severe, ongoing irritation from asbestos fibers can change cell DNA. These DNA mutations can lead to cancer. Some researchers say radiation and other genetic mutations, like BAP1 mutations, may contribute to the development of mesothelioma. But asbestos exposure remains the main cause of mesothelioma.

Risk Factors for Pleural Mesothelioma

Occupational asbestos exposure is the No. 1 cause of pleural mesothelioma. Many jobs put workers at risk of exposure when making or using products containing asbestos. While most asbestos use has been phased out since the 1980s and 1990s, today workers may come into contact with older or legacy asbestos products.

Who Is at Risk of Asbestos Exposure?

• Auto mechanics 
• Construction workers
• Demolition crews
• Factory and industrial workers
• Firefighters
• Insulators
• Military personnel
• Miners
• Power plant workers
• Shipyard workers

People living with those who come into contact with asbestos at work can also be at risk of developing pleural mesothelioma. Asbestos fibers can be brought home on clothing, shoes, gear, skin and hair. 

Pleural mesothelioma survivor Shaun Bigbie tells us his father and uncle came into contact with asbestos while working at the Ford Motor Company. Shaun says, “They think somewhere along the line my father brought asbestos on his clothing home to me. My uncle said there were days [at work] where he would see the light shining in through the window and you would just see fibers everywhere in the air.” 

Symptoms of Pleural Mesothelioma

The most common symptoms of pleural mesothelioma are shortness of breath, back and chest pain and fatigue. Fluid around your lungs, called pleural effusions, can be one of the first signs of this disease. Pleural thickening and areas of thickened pleura, called pleural plaques, can also be signs. 

Common Pleural Mesothelioma Symptoms

• Chest pain or painful breathing
• Coughing up blood
• Difficulty swallowing
• Dry, persistent cough
• Fatigue
• Fever or night sweats
• Hoarseness
• Lumps under the skin on the chest
• Muscle weakness
• Pain in the lower back or ribs
• Shortness of breath or difficulty breathing
• Swelling of the face or arms (edema)
• Unexplained weight loss

Pleural mesothelioma symptoms are similar to other diseases such as flu or pneumonia. Because of its rarity and nonspecific symptoms, pleural mesothelioma can go undiagnosed until symptoms worsen and the disease progresses. 

If you have a history of asbestos exposure, it’s important to note your risk when discussing your symptoms with your doctor. This can help confirm a diagnosis as early as possible.

Joey Barna

Verified Asbestos.com Survivor

Early Symptoms Lead to Pleural Mesothelioma Diagnosis

Joey Barna was diagnosed with pleural mesothelioma after experiencing fluid in his lungs. His symptoms were initially mistaken for pneumonia, delaying his diagnosis and treatment. With our Patient Advocate team’s help, he received the proper diagnosis and treatment. Despite having a rough time with his treatment initially, he’s feeling great today and is living life to the fullest.

Joey Barna

Verified Asbestos.com Survivor

Read Joey’s Story

How Is Pleural Mesothelioma Diagnosed?

A pleural mesothelioma diagnosis often begins with a physical exam and imaging scans such as chest X-rays and CT scans. If your scans show fluid buildup or pleural thickening, your doctor will order a biopsy to analyze a tissue sample. A biopsy is necessary to confirm a pleural mesothelioma diagnosis.

Diagnostic Tools for Pleural Mesothelioma

1. Physical Exam: First your doctor will check for abnormalities, like a skin bump. They’ll also check tender or painful areas.
2. Blood Tests: Next, blood may be drawn. These tests allow experts to look for signs (like biomarkers) that can help in the diagnostic process.
3. Imaging Scans: X-rays, MRIs, CT scans and PET scans help spot signs of cancer and the location of tumors.
4. Biopsy: During a short surgery with anesthesia or a sedative, your doctor will remove a small piece of tissue to check for cancer cells.

During a biopsy, smaller cell samples can also be collected for a cytology sample. As Dr. Snehal Smart, medical doctor and Patient Advocate at The Mesothelioma Center explains, “Doctors can drain a pleural effusion or the fluid buildup in the lining of the lungs and perform a cytology exam.”

“This test studies the cells to find any abnormal cancer cells in the fluid,” Snehal adds. “Any presence of mesothelial cancer cells would show a diagnosis of mesothelioma.”

What Do Pleural Mesothelioma Stages Mean for Me?

Following your biopsy, the pathology report you receive will likely indicate your pleural mesothelioma stage. This indicates how far your cancer has progressed. Early mesothelioma stages mean tumors are still localized or close to the area where they first developed. Later stages mean the cancer has spread further.

Doctors typically use the TNM staging system for pleural mesothelioma. TNM stands for tumor, node and metastasis. 

Pleural Mesothelioma Stages

• Stage 1: Tumors form in and around the tissue lining of one lung.
• Stage 2: Cancer cells enter nearby lymph nodes.
• Stage 3: Cancer spreads to nearby tissues and distant lymph nodes.
• Stage 4: Distant organs are affected.

Dr. Jeffrey Velotta, a pleural mesothelioma expert and thoracic surgeon at Kaiser Permanente Oakland Medical Center, tells us the American Joint Committee on Cancer has updated the TNM staging system for pleural mesothelioma in its 9th edition, released in January 2025. The new system, he explains, includes more details to enhance and refine the pleural mesothelioma staging process.

“The new TNM staging system for pleural mesothelioma includes pleural thickness measurements from CT scans, size requirements to refine CT categories and discussion of molecular markers,” Dr. Velotta says. “The benefits of these changes for patients is that standardizing measurements of tumors can help improve treatment guidelines and prognostic information.”

Treatment Options for Pleural Mesothelioma

The American Society of Clinical Oncologists released updated treatment guidelines for pleural mesothelioma in January 2025. The updates introduce important changes to the current approach to treatment options in key areas: Immunotherapy, combination therapies, radiation and surgery.

The new ASCO guidelines indicate a preference for lung-sparing surgeries vs. lung removal surgeries. Guidelines suggest moving away from broad use of radiation and presurgical radiation therapy. 

The updated guidelines reflect a shift in preferring immunotherapy over chemo as a first-line treatment for many patients with pleural mesothelioma. This is based on data from clinical trials that showed immunotherapy improved overall survival. 

Drug combinations are also highlighted in the updated guidelines. In September 2024, the Food and Drug Administration approved Keytruda (pembrolizumab) with pemetrexed and platinum chemo as a first-line treatment of unresectable advanced or metastatic malignant pleural mesothelioma.

How Can I Find the Best Pleural Mesothelioma Specialist for Me?

Pleural mesothelioma specialists, including oncologists, surgeons and radiologists, can be found at renowned mesothelioma treatment centers across the U.S. Finding the right specialist for you can depend on the stage of your cancer, other coexisting health conditions, your overall health, as well as your personal treatment goals and preferences.

Your doctor can help refer you to a specialist. Patient Advocates can also help match you with a specialist you’ll feel comfortable with and who has extensive experience treating similar pleural mesothelioma cases as yours.

Dr. Jacques Fontaine, a pleural mesothelioma surgeon at Moffitt Cancer Center in Tampa, tells us, “With this disease, finding a specialist is critical. You need someone who truly understands it. They must know how to treat it aggressively for the best outcome.”

Prognosis for Pleural Mesothelioma

Predicting an individual’s prognosis is complex and challenging. While pleural mesothelioma prognosis is typically poor, a number of factors play a role. Some survivors have successfully lived with pleural mesothelioma for many years.

Factors That Affect Pleural Mesothelioma Prognosis

• Age: Younger patients tend to live longer.
• Cell Type: Your specific mesothelioma cell type can impact how effective treatment is.
• Gender: Women tend to live longer with the disease than men.
• Healthy Lifestyle: Those who exercise and have better nutrition tend to have a better prognosis.
• Pleural Fluid: Those with more pleural fluid in their chest often have a worse prognosis.
• Recurrence: Mesothelioma returning is associated with a poorer prognosis.
• Stage: This is the most important factor. A diagnosis in the early stages may lengthen survival.

No doctor can determine your individual life expectancy based only on a diagnosis of pleural mesothelioma. Pleural mesothelioma progresses fast. Life expectancy is often less than 18 months, and the median survival is 8 to 14 months. However, treatment advances are extending survival and improving quality of life. 

Living With Pleural Mesothelioma

Sissy Hoffman has lived with pleural mesothelioma for nearly 30 years since her diagnosis in 1996. Because of her unusually young age at the time of her diagnosis (47 years old), overall health and aggressive treatment, she was able to survive well beyond what was expected at the time.

Hoffman told us in an interview that she credits mesothelioma treatment pioneer Dr. David Sugarbaker with radically changing her prognosis. “Dr. Sugarbaker not only extended my life, but he forced me to live a fuller life,” Hoffman shared. She returned to teaching, traveled and even went snorkeling while in Panama on a vacation. She was also profiled in the press in 2022 for her volunteer work helping refugees.

Long-time survivor Michael Cole shares his tips for living with pleural mesothelioma. In addition to staying hydrated, eating a healthy diet and staying active, he advises, “It is crucial to maintain good mental health.” 

Questions Our Patients Advocates Are Commonly Asked 

We asked our team of Patient Advocates here at The Mesothelioma Center what questions pleural mesothelioma patients and their loved ones most commonly ask when they call us. They’ve shared these frequently asked questions and their helpful answers.

Do I need a second opinion about my diagnosis?

Getting a second opinion about your diagnosis with a pleural mesothelioma specialist can help confirm you have the most accurate and refined picture of your current health. This rare cancer is often initially misdiagnosed. If you have a history of asbestos exposure, it can be especially important to speak with a specialist familiar with pleural mesothelioma.

We often connect patients with experienced doctors. We can streamline their process, including transferring records and scheduling consultations.

How do I know which treatment option is best for me?

If you’re weighing different treatment options or wondering if there are options beyond those your doctor has suggested, a second opinion may help.

If you’ve received opinions from different specialists and are wondering which treatment path is best for you, consider what’s most important to you and your loved ones.  Each treatment path can look very different. Some patients choose aggressive surgery plans that may have difficult recovery periods but can extend survival. Others may wonder about mesothelioma survival without treatment. These are deeply personal decisions.

Can my pleural mesothelioma be passed on to my children or grandchildren?

Some families may have multiple loved ones who are diagnosed with pleural mesothelioma or other asbestos-related diseases. As we shared previously, Shaun Bigbie’s father and uncle worked at the same company with known occupational asbestos exposure risks. Families can be exposed through shared primary and secondary exposure from a family member’s work, asbestos products in the home they share or environmental asbestos.

Many patients wonder if there are genetic risk factors for mesothelioma. Hereditary factors can increase the risk of developing mesothelioma if exposed to asbestos. Speak with your doctor about your risk factors and regular mesothelioma screenings.

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