What is Mesothelioma? Causes, diagnosis, and support

Mesothelioma is a rare cancer with a terminal prognosis caused by asbestos exposure. Accounting for fewer than 1% of all cancers, it affects the mesothelial cells, which make up the mesothelium, the membrane that lines the outer surface of most organs. Mesothelioma is caused when asbestos fibres make their way into the mesothelium. The onset of disease may present many years after the initial exposure ranging from 10-50 years.

Australia has one of the highest incidences of mesothelioma in the world. According to the Australian Mesothelioma Registry, each year over 700 Australians are diagnosed with pleural mesothelioma. Men are over three times more likely than women to be diagnosed with pleural mesothelioma. This is probably because many cases have been caused by exposure to asbestos at work. Western Australia has the most cases per population due to past asbestos mining. Pleural mesothelioma is more common in people over the age of 70, but can sometimes occur in younger people.

Currently, there is no cure for mesothelioma. Certain treatments may extend life expectancy and help achieve long-term remission dependant on the stage of diagnosis, type of cancer and patient health, however, due to the aggressive nature of mesothelioma and often late diagnosis, the mesothelioma survival rates are very low. This is what ADDRI is working hard to address.

Mesothelioma is a rare but aggressive form of cancer that develops in the thin protective lining that surrounds the lungs, abdomen, heart, or testes. Its cause is unmistakable: exposure to asbestos — a once-common building material used throughout Australia for much of the 20th century.

Today, Australia has one of the highest rates of mesothelioma in the world. Around 900 people are diagnosed here each year, many of whom were exposed decades ago, often in the course of their work or while renovating a home.

At the Asbestos Diseases Research Institute (ADDRI), we are working to change the future of mesothelioma. Through world-leading research, public education, and advocacy, we are helping to uncover better ways to prevent, detect and manage this devastating disease.

The different forms of Mesothelioma

Mesothelioma is not a single disease, but rather a group of cancers named for the area of the body they affect.

• Pleural mesothelioma develops in the lining of the lungs. It is the most common type, accounting for approximately 75% of all cases.
• Peritoneal mesothelioma affects the lining of the abdominal cavity. It is less common but still serious, often presenting with abdominal discomfort or swelling.
• Pericardial mesothelioma forms in the lining around the heart. This type is extremely rare and difficult to diagnose.
• Testicular mesothelioma is the rarest form and occurs in the lining around the testes.

While each form behaves slightly differently and may require different treatment approaches, all share the same root cause: asbestos exposure.

How Asbestos exposure leads to Mesothelioma

Asbestos fibres are extremely fine and, when disturbed, can become airborne and inhaled into the lungs or swallowed. Once inside the body, these fibres can remain for years — causing inflammation, cell damage, and eventually, cancer.

The risk is highest for those who worked in construction, shipbuilding, mining, or manufacturing during the decades when asbestos was widely used. However, exposure has also occurred through home renovations, contaminated clothing, or even living near industrial sites.

What makes mesothelioma particularly insidious is its latency. The disease can take anywhere from 20 to 50 years to appear after the initial exposure, making it one of the longest-latency occupational cancers.

Signs and symptoms

Symptoms of mesothelioma often develop gradually, and are frequently mistaken for more common illnesses. Many people are diagnosed only after experiencing persistent health issues that don’t respond to routine treatment.

In pleural mesothelioma — the most common type — early symptoms often include breathlessness, chest pain, and a persistent dry cough. Some people notice unexplained weight loss or a general sense of fatigue. Peritoneal mesothelioma may cause abdominal swelling, discomfort, changes in bowel habits, or nausea.

If you or someone you care about has a history of asbestos exposure, it’s important to speak to your GP about any unusual or ongoing symptoms. Early detection can significantly improve treatment options and quality of life.

Diagnosis and treatment

Diagnosing mesothelioma usually begins with imaging scans such as chest X-rays or CT scans, followed by a biopsy to confirm the presence of cancer cells. Blood tests may also be used to identify markers associated with mesothelioma.

Once diagnosed, treatment depends on the location, stage, and extent of the disease — as well as the individual’s overall health and personal preferences. Surgery may be an option in early-stage cases, particularly if the cancer is confined to one area. Chemotherapy and radiation are commonly used to slow disease progression and manage symptoms. In recent years, immunotherapy has shown promise in improving outcomes for some patients.

Because every case is different, treatment plans are typically developed by a multidisciplinary team, often involving oncologists, respiratory specialists, palliative care experts and allied health professionals.

Living with Mesothelioma

A mesothelioma diagnosis changes everything — not only for the person affected, but for their family and community. It brings practical, emotional, and psychological challenges that are often overwhelming in the beginning.

Support is essential. Many people find strength in connecting with others who understand what they’re going through, whether through peer groups, counselling, or specialised nursing support. Managing the physical aspects of the disease – including fatigue, breathlessness, or pain – is only part of the journey. Mental wellbeing, nutrition, mobility and communication all play a role in maintaining quality of life.

At ADDRI, we believe that everyone diagnosed with mesothelioma deserves care that is not only expert but compassionate — care that recognises the whole person, not just the disease.

Support and resources

Navigating a rare cancer can feel isolating, but you are not alone.

For personalised guidance, our Mesothelioma Support Nurses are here to help you navigate your diagnosis, understand your treatment options, and connect with practical resources. This free, confidential service is available to anyone affected by mesothelioma.

There are dedicated services across Australia to help you access the support you need. ADDRI works alongside other national organisations to provide up-to-date information, support group referrals, and education for both patients and their families. Legal and financial guidance is also available to help those affected by occupational exposure secure the compensation and care they deserve.

You can also connect with stories of lived experience via the Dust Diseases Podcast or explore upcoming events and education opportunities via our Support Groups and Activities page.

ADDRI’s role in Mesothelioma research

Our mission is to eliminate mesothelioma — and the suffering it causes — through science, education, and systems change.

At ADDRI, we lead and collaborate on research projects that explore new ways to detect mesothelioma earlier, develop more effective treatments, and better understand how and why asbestos causes harm. Our scientists work in partnership with clinicians, universities, and international institutes to translate discovery into action — and improve lives in the process.

We also support clinical trials, collect data through the Australian Mesothelioma Registry, and advocate for stronger workplace protections and public awareness.

Frequently Asked Questions

Take the next step

Whether you’re looking for answers, hope, or a way to help, ADDRI is here for you.

• Contact us for personalised support or information
• Speak to our Mesothelioma Support Nurses for one-on-one support and information
• Join a support group to connect with others who understand
• Health professionals can access our rapid eLearning Mesothelioma Education Module here: ADDRI Education – Learning Objectives
• Subscribe to our newsletter for research updates and upcoming events
• Learn more about our research and how you can support a future free from mesothelioma

Because knowledge is powerful — and together, we can make a difference.

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