Mesothelioma

The mesothelium (protective membrane) that covers each lung is called the pleura. Mesothelioma that develops in the pleura is called pleural mesothelioma, and accounts for about 92% of mesothelioma cases. Pleural mesothelioma is not the same as lung cancer – it is diagnosed and treated differently.

The pleura

There are 2 layers of tissue in the pleura. The inner layer (the visceral pleura) covers the lung surface, and the outer layer (the parietal pleura) lines the chest wall and diaphragm. Mesothelioma causes these 2 layers of the pleura to thicken. They can then press on the lung, stopping it expanding when you breathe in (inhale).

Between the 2 layers of the pleura is the pleural cavity (also called the pleural space), which normally contains a thin film of fluid. This fluid allows the 2 layers of pleura to slide over each other – so the lungs move smoothly against the chest wall when you breathe. When too much fluid collects in the pleural cavity, it is called pleural effusion.

The respiratory system

Pleural mesothelioma affects the pleura – the membrane that covers the lungs. The lungs are the main organs used for breathing. They are part of the respiratory system, along with the nose, mouth, windpipe (trachea), large airways (bronchi) and smaller airways (bronchioles). The lungs rest on the diaphragm – a wide, thin muscle that helps you to breathe.

The mesothelium (protective membrane) that covers the organs and lines the walls of the abdomen and pelvis is called the peritoneum.

Mesothelioma that develops in the peritoneum is known as peritoneal mesothelioma. It is far less common than pleural mesothelioma (which is found around the lungs), and accounts for less than 5% of all mesotheliomas.

The peritoneum

There are 2 layers of thin tissue in the peritoneum. The inner layer (the visceral peritoneum) lines the surface of organs such as the bowel, liver and ovaries. The outer layer (the parietal peritoneum) lines the walls of the abdomen and pelvis.

Between the 2 layers of the peritoneum is the peritoneal cavity, which normally contains a very thin film of fluid. This fluid allows the 2 layers to slide over each other. In people with peritoneal mesothelioma, too much fluid often collects between the 2 layers in this cavity. This is called ascites or peritoneal effusion.

The abdomen and pelvis

Peritoneal mesothelioma affects the peritoneum – the membrane that lines the walls and covers the organs of the abdomen and pelvis. These organs include the stomach, bowel, liver, kidneys and, in females, the uterus and ovaries.

In rare cases, mesothelioma can develop in the pericardium, which is a thin, double-layered sac that surrounds the heart. This is called pericardial mesothelioma.

Even more rarely, mesothelioma can occur in the membrane that surrounds the testicles, known as the tunica vaginalis. This is called testicular mesothelioma.

Download our fact sheet 'Understanding Rare and Less Common Cancers'

Exposure to asbestos fibres or asbestos dust is the cause of almost all (9 out of 10) cases of mesothelioma.

Asbestos is the name for a group of naturally occurring minerals that are resistant to high temperatures and humidity. Asbestos was used in many building products in Australia from the 1940s until 1987. Since 2003, Australia has banned asbestos being sold, reused and/or imported, but it is still found in older buildings, so special care needs to be taken when renovating. It has also been found in some products from overseas.

People who may have been exposed to asbestos at work include: builders, plumbers, gasfitters and electricians; metal-fitters, turners and toolmakers; boilermakers and welders; steelworkers; asbestos miners; asbestos cement manufacturing workers; insulators; automotive industry workers; mechanics; transport workers (especially waterside workers); telecommunications technicians; marine engineers, shipwrights/boatbuilders; and textile workers.

People cleaning work clothes with asbestos fibres on them, some people who lived in houses containing asbestos, or people spending time in areas where asbestos has been disturbed during renovations or maintenance, can also develop mesothelioma.

It can take many years for mesothelioma to develop after a person is exposed to asbestos. It is often about 50 years after exposure, but may be 10–60 years. This is called the latency period or interval.

Australia has one of the highest rates of mesothelioma in the world, with about 800 Australians diagnosed each year. Men make up the majority of cases, with less than a quarter of people diagnosed with mesothelioma being women. This is possibly because asbestos exposure is more common in jobs that were traditionally done by men, such as mining and construction.

Pleural mesothelioma makes up about 92% of cases; peritoneal mesothelioma makes up less than 5% of cases; and other types are even more rare. Mesothelioma is more commonly diagnosed in people aged over 65, but can occur in younger people.

The plan for what happens if you have mesothelioma can vary from person to person, but is usually as follows:

Diagnosis and staging – You will have various tests to confirm a diagnosis of mesothelioma and work out how far it has progressed. The results will help you and your health professionals make decisions about treatment.

Treatment – Depending on how advanced the mesothelioma is and other factors, treatment may achieve a longer period of disease control and improve quality of life.

Managing symptoms – For many people, the main goal of treatment will be to manage symptoms and improve quality of life. Depending on how mesothelioma affects your health, you may have periods of relatively good health when symptoms are under control or less active. You may also have periods when symptoms need to be relieved with more intensive treatment.

The first signs of mesothelioma are often vague and similar to other conditions. If you are concerned, see your general practitioner (GP). It can take time to be diagnosed, as the symptoms may come and go, and more common conditions are often investigated first. Let your GP know if you think you have been exposed to asbestos in the past. Finding mesothelioma early may mean more treatment options are available to you.

Pleural mesothelioma may cause:

• shortness of breath (breathlessness), which usually feels worse with activity or when you are lying down
• pain in the chest around the ribs or in the shoulder, which may be sharp and stabbing, worse with deep breaths, or dull and persistent
• extra-sensitive skin or change in skin sensation (less common)
• general symptoms such as loss of appetite with weight loss; loss of muscle bulk; fatigue or loss of energy; a persistent cough or a change in coughing pattern; and night sweats.

Peritoneal mesothelioma may cause:

• abdominal pain
• a swollen abdomen
• poor appetite, nausea and vomiting
• unexplained increase in fatigue and low energy
• night sweats or fever
• bowel or urinary problems.

People who develop mesothelioma due to asbestos exposure may be able to make a claim for compensation. It’s helpful to make notes and talk to family and friends about when and where you may have been exposed to asbestos.

It is important to get advice from an experienced lawyer as soon as possible after diagnosis, because a case for compensation must be started within your lifetime. Mesothelioma or asbestos support groups may be able to help you with more information about seeking compensation.

Your GP will arrange the first tests to assess your symptoms. If these tests do not rule out mesothelioma, you will usually be referred to a specialist, such as a respiratory physician or gastroenterologist. The specialist will arrange further tests.

If mesothelioma is diagnosed, the specialist will consider the treatment options. Often these will be discussed with other health professionals at what is known as a multidisciplinary team (MDT) meeting. During and after treatment, you will see a range of health professionals who specialise in different aspects of your care.

Health professionals you may see

GP – assists you with treatment decisions and works in partnership with your specialists in providing ongoing care

Respiratory (thoracic) physician – diagnoses diseases of the lungs, including pleural mesothelioma, and recommends ways to treat any symptoms

Gastroenterologist – diagnoses and treats disorders of the digestive system, including peritoneal mesothelioma

Radiologist – analyses x-rays and scans; an interventional radiologist may also perform a biopsy under ultrasound or CT, and deliver some treatments

Pathologist – examines cells and tissue samples to work out the type

Thoracic (respiratory) surgeon – conducts some biopsy procedures and performs surgery to prevent and treat symptoms of pleural mesothelioma, including radical surgery

Surgical oncologist/surgeon specialised in mesothelioma – performs surgery to prevent and treat symptoms of peritoneal mesothelioma

Medical oncologist – treats cancer with drug therapies such as chemotherapy, immunotherapy and targeted therapy (systemic treatment)

Radiation oncologist – treats cancer by prescribing and overseeing a course of radiation therapy

Palliative care specialist – treats pain and other symptoms to maximise wellbeing and improve quality of life

Palliative care team – work closely with the GP and other specialists to help control symptoms such as pain, breathlessness, nausea and anxiety, and maintain quality of life

Nurse – administers drugs and provides care, support and information throughout treatment

Cancer care coordinator – coordinates your care, liaises with other members of the MDT and supports you and your family throughout treatment; care may also be coordinated by a clinical nurse consultant (CNC) or clinical nurse specialist (CNS)

Community nurse – visits you at home to provide medical care and treatment, assesses your needs for supportive care, and liaises with your GP and MDT as required

Dietitian – helps with nutrition concerns and recommends changes to diet during treatment and recovery

Physiotherapist, exercise physiologist, occupational therapist – assist with physical and practical problems, including restoring movement and mobility after treatment and recommending aids and equipment

Social worker – links you to support services and helps you with emotional, practical and financial issue

Psychologist – helps you manage your emotional response to diagnosis and treatment

Blood tests and x-rays can provide information about your overall health and help to rule out other conditions.

Blood test

You will have blood taken to check your general health and let your doctors know how your blood cells, liver and kidneys are working. This helps them work out your fitness for any treatment. Mesothelioma does not usually show up on a blood test, but results may show substances (called tumour markers) that are produced by cancer cells.

X-ray

If you have chest symptoms, you may first have a chest x-ray to look for any changes in the lungs, thickening of the pleura, and fluid in the space between the lungs and the chest wall. If you have abdominal symptoms, an x-ray may look for changes in the abdomen, such as fluid and thickening in the peritoneum.

If fluid, thickening or other changes are found, you will need more tests to check whether mesothelioma or another condition is the cause.

Mesothelioma does not always show up on an x-ray and can be hidden by other organs within the chest cavity. So let your doctor know if you think you may have been exposed to asbestos so that they can investigate further.

Before having scans, tell the doctor if you have any allergies or have had a reaction to contrast during previous scans. You should also let them know if you have diabetes or kidney disease, or are pregnant or breastfeeding.

If mesothelioma is suspected, you will usually have a CT scan. A CT (computerised tomography) scan uses x-ray beams and a computer to take detailed cross-sectional pictures of the inside of your body. Most CT scans are done at a hospital or radiology clinic and you can usually go home as soon as the test is over. You may be asked not to eat or drink (fast) for several hours leading up to having the scan.

Immediately before the scan, you will be given an injection of a liquid dye, called contrast, into a vein, which makes the pictures clearer. The contrast may make you feel flushed or hot all over and leave a bitter taste in your mouth, and you may feel sick or feel a sudden urge to pee. These feelings should pass quickly, but tell someone if you feel unwell.

The CT scanner is a large, doughnut-shaped machine. You will need to lie still on a table while the scanner moves around you. Getting ready for the scan can take 10–30 minutes, but the scan itself takes only a few minutes and is painless. Lying flat and still can be uncomfortable, so speak to your doctor or radiologist about any discomfort.

The CT scan shows the location and thickness of the tumour/s in the chest or abdomen. It may also show if the mesothelioma has spread to other organs. The information from the CT scan is used to work out the best way to get tissue for testing (called a biopsy).

Before having scans, tell the doctor if you have any allergies or have had a reaction to contrast during previous scans. You should also let them know if you have diabetes or kidney disease, or are pregnant or breastfeeding.

A biopsy is the main test used to diagnose mesothelioma. It involves removing a sample of tissue, which is examined under a microscope by a specialist doctor called a pathologist. The pathologist looks for cell changes to work out if the tumour is mesothelioma and the type of cells present. There are 3 main types of mesothelioma cells:

Epithelioid – look similar to normal mesothelial cells. This is the most common type, making up about 75% of cases.

Sarcomatoid (fibrous mesothelioma) – have changed and look like cells from fibrous tissue. This type makes up about 10–15% of cases.

Mixed or biphasic – has epithelioid and sarcomatoid cells. This type makes up about 10% of all cases.

Ways to take a biopsy for mesothelioma

A biopsy can be taken in different ways. The choice of biopsy will depend on your general health and fitness, and how suitable the tumour is for sampling using one of the methods described below.

Keyhole surgery (VATS or laparoscopy) is the most commonly used biopsy technique for mesothelioma, as both tissue samples and fluid can be removed for testing. Obtaining a sample can be challenging, so a respiratory physician or gastroenterologist, radiologist, surgeon and pathologist may all be involved.

Video-assisted thoracoscopic surgery (VATS) – Sometimes called a thoracoscopy, VATS is used to obtain a tissue sample from the lining of the lungs (pleura). You will be given a general anaesthetic, then a thin tube with a light and camera (thoracoscope) will be inserted through a few small cuts in your chest. Tissue samples can be taken through the tube and sent to a laboratory for testing.

If fluid has built up around the lungs and is causing breathlessness, it can be drained during the VATS and you may have a pleurodesis to prevent the fluid building up again. You will usually be given medicine for any pain you feel after VATS.

Laparoscopy – This is used to get a tissue sample from the lining of the abdomen  (peritoneum). You will be given a general anaesthetic, then a thin tube with a light and camera will be inserted through small cuts made in your abdomen. Tissue samples can be removed through the tube and sent to a laboratory for testing. If fluid has built up in the abdomen, it can be drained during the laparoscopy. Any infections that develop will be treated with antibiotics.

CT-guided core biopsy – A CT-guided core biopsy may be used instead of VATS or laparoscopy when there is a large mass but no fluid.

You will be given a local anaesthetic. Using a CT scan for guidance, the doctor inserts a needle through the skin to remove a small piece of tumour from the lining of the lungs or abdomen.

During a CT-guided core biopsy, you will need to lie still on a table for about 30 minutes. You will be monitored for a few hours afterwards. There is a small risk of damaging the lung, but this can be treated if it does occur.

PET–CT scan – A PET (positron emission tomography) combined with a CT scan may be used to see how far mesothelioma has spread. It is usually available at major hospitals.

A small amount of radioactive glucose solution is injected into a vein, usually in your arm. You will sit quietly for 30–90 minutes as the glucose solution travels around your body. You then lie on a table that moves through the scanning machine very slowly.

Cancer cells take up more of the glucose solution than normal cells, so they show up brighter on the scan. This test is painless.

Molecular tests and special stains – To confirm a diagnosis of mesothelioma, the pathologist sometimes needs to do further tests on the tissue sample. These are known as molecular tests and special stains. They look for specific molecules that help to tell mesothelioma apart from other types of cancer.

Molecular tests and special stains – To confirm a diagnosis of mesothelioma, the pathologist sometimes needs to do further tests on the tissue sample. These are known as molecular tests and special stains. They look for specific molecules that help to tell mesothelioma apart from other types of cancer.

Draining build-up of fluid

When you first have symptoms of mesothelioma, you are likely to have a build-up of fluid in the space around your lungs or in your abdomen. Fluid around the lungs is called pleural effusion and can make it hard to breathe. Fluid in the abdomen is called ascites and may make it swollen and uncomfortable.

Before further tests or treatment, your doctor may drain the collection of fluid to help ease symptoms. When fluid is drained from the pleura, it is called a pleural tap, pleurocentesis or thoracentesis; when fluid is drained from the peritoneum, it is called a peritoneal tap or paracentesis.

Draining the fluid may be done at the same time as VATS or laparoscopy and the fluid may be tested to look for mesothelioma.

Diagnosis from fluid samples

Sometimes a fluid sample may be used to help make a diagnosis of mesothelioma –  particularly if you are not well enough to have a biopsy. In this case, fluid is collected at the same time as draining the pleural or peritoneal cavity.

It can be hard to diagnose mesothelioma from these fluid samples, because abnormal mesothelioma cells often look similar to other cells. To be as accurate as possible, this technique should be done at a specialist centre. This is because a large volume of fluid must be collected, and the results have to be combined with information from an x-ray and CT scan.

Sometimes, even after several tests, doctors may be unsure of the diagnosis and some tests may need to be repeated. This is common when trying to diagnose mesothelioma.

If mesothelioma is diagnosed, you will have tests to work out the extent of the disease and if it has spread to other parts of the body. This is called staging, and helps your health care team recommend the best treatment for you. The main tests used are a CT or a PET–CT scan. If you already had a CT or PET–CT scan during diagnosis, which showed advanced disease, a further scan may not be necessary.

Staging systems for mesothelioma

TNM staging system for pleural mesothelioma

The staging system recommended for pleural mesothelioma is the international tumour–node–metastasis or TNM staging system.

T (tumour) 1–4 – Describes if the pleural mesothelioma has grown into the chest wall, diaphragm, lung or beyond. The higher the number, the further it has grown. If limited to the pleura on one side of the chest, it is T1. If it has grown into the lung, chest wall, ribs or diaphragm, lining of the heart or beyond, it is T2, T3 or T4.

N (node) 0–2 – Shows if pleural mesothelioma has spread to lymph nodes. No lymph nodes affected is N0; spread only to lymph nodes in same side of chest is N1; spread to lymph nodes in the other side or centre of chest, or in the neck, is N2.

M (metastasis) 0–1 – Shows if pleural mesothelioma has spread to other parts of the body. M0 means no spread to distant organs; M1 means it has spread to the bones, liver or other distant organs.

PCI system for peritoneal mesothelioma

Peritoneal mesothelioma is usually staged using the peritoneal cancer index (PCI). The area of the abdomen and pelvis is divided into 13 regions. A score out of 3 is given to any tumours found in these regions. The PCI is calculated by adding together the scores for all 13 regions, with a maximum score of 39. The higher the PCI, the further the cancer has spread.

If radical surgery is being considered as a suitable treatment option (part of trimodal therapy), you may have other scans and procedures to check whether mesothelioma has spread to other areas of the body. These tests may include:

FDG–PET – A positron emission tomography (PET) scan detects radiation from a low-level radioactive drug that is injected into the body. In an FDG–PET, the drug used is called fluorodeoxyglucose (FDG). The FDG shows up areas of abnormal tissue.

MRI scan – A magnetic resonance imaging (MRI) scan uses a powerful magnet and radio waves to create detailed, cross-sectional pictures of the soft tissues in your body. The noisy, narrow machine makes some people feel anxious or claustrophobic. If you think you may become distressed, mention it beforehand to your medical team. You may be given a mild sedative to help you relax.

Endobronchial ultrasound (EBUS) – This is a type of bronchoscopy that allows the doctor to see the trachea and deep into the lung. It can also take samples of cells from a tumour or lymph nodes in the middle of your chest (mediastinum) or next to the airways, or from the outer parts of the lung. Samples of lymph nodes can help to confirm whether or not they are also affected by cancer. This can help the treatment team to work out the stage of the cancer.

Surgical staging – If it is unclear from the PET–CT scan whether pleural mesothelioma has spread, the surgeon may remove a sample of lymph nodes and tissue from other areas of the body to check. This is known as surgical staging. It is not recommended before a peritonectomy for peritoneal mesothelioma.

Prognosis means the expected outcome of a disease. You may wish to discuss your prognosis with your doctor, but it is not possible for anyone to predict the exact course of the illness.

Mesothelioma behaves differently in different people, which will affect prognosis. The disease is often there for many months before being diagnosed at an advanced stage. After diagnosis, mesothelioma may progress quickly or more slowly. If it progresses slowly, some people may live for several years or longer.

Your doctor will consider several factors when discussing prognosis with you, including:

• the type of mesothelioma cell
• the stage
• the type of treatment you are able to have
• your symptoms, such as weight loss or pain
• your blood count – people with normal levels of blood cells usually have a better prognosis
• your overall health – recovering quickly after procedures tends to suggest a better outcome.

While knowing the stage helps doctors plan treatment, it can’t always indicate a prognosis for people with mesothelioma. This is partly because it is hard to predict how quickly mesothelioma will grow. Usually the earlier the stage, the better the prognosis.

If the mesothelioma has advanced to a point where it is unlikely to respond to treatment, the priority will be to relieve symptoms and improve your quality of life.

Immunotherapy 

This is a type of drug treatment that uses the body’s own immune system to fight cancer. Immunotherapy drugs called checkpoint inhibitors block proteins that stop immune cells from recognising and destroying cancer cells, so the immune cells can potentially recognise and attack the cancer. Immunotherapy doesn’t always work for everyone.

Immunotherapy is now the usual first option for people well enough to have any treatment. It’s also used for people who had chemotherapy as their first treatment. However, it may not be used up-front if you are having trimodality therapy. Your medical oncologist will discuss whether immunotherapy is the most suitable option for you. 

The immunotherapy drugs most commonly used are ipilimumab and nivolumab in combination. These are covered by the PBS for most people, and sometimes on workplace insurance (e.g. icare in NSW). 

Having immunotherapy – Immunotherapy drugs are usually given through a vein (intravenously) in hospital and can take between 30 and 90 minutes. You will wait a short time to be monitored for any reaction before going home. Immunotherapy may be used alone or in combination with chemotherapy. 

Side effects of immunotherapy – Immunotherapy can cause inflammation throughout the body, which may lead to different side effects depending on which part of the body is inflamed. 

The combination of immunotherapy drugs may increase the risk of side effects, which include fatigue, rash, painful joints and diarrhoea.

Most people have mild side effects that are easily treated and usually improve. More serious side effects may include heart and thyroid problems, but your doctor should discuss any concerns with you. 

It’s important to let someone on your medical team know if you have any new or worsening symptoms, rather than just put up with them – even if they happen weeks or months after you had immunotherapy treatment. If untreated, some side effects can become serious or even life-threatening. For a detailed list of side effects, visit eviQ. 

Download our fact sheet 'Understanding Immunotherapy' 

Chemotherapy 

Chemotherapy uses drugs to kill or slow the growth of cancer cells while causing the least possible damage to healthy cells. The goal of chemotherapy is usually to shrink the cancer, reduce symptoms and improve quality of life. For some people with mesothelioma, chemotherapy doesn’t work. 

The main chemotherapy drugs used for pleural mesothelioma are pemetrexed in combination with carboplatin or cisplatin. The targeted therapy drug bevacizumab may be added to this combination. Research shows that using some drugs together can give improved results compared with using just a single drug. Vinorelbine (and less commonly gemcitabine) may be used if mesothelioma returns. 

Having chemotherapy – Chemotherapy is usually given through a drip into a vein (intravenously). The drugs travel through the bloodstream and reach the entire body. This is known as systemic chemotherapy. 

You will usually have chemotherapy during day visits to your hospital or treatment centre. Each session may last for several hours and be followed by a rest period of several weeks. Together, the session and rest period are called a cycle. You will probably have up to 6 cycles. However, the length and timing of the treatments and rest days of each cycle may vary from person to person. 

Chemotherapy weakens the immune system by lowering the level of white blood cells, making it harder for your body to fight infections. If you have a temperature over 38oC, contact your doctor immediately or go to your nearest hospital emergency department. 

Side effects of chemotherapy – Most chemotherapy drugs cause side effects, which depend on the type and dose of the drug. You may have vitamin B12 injections and low-dose folic acid, which have been shown to reduce the side effects of pemetrexed and cisplatin. 

Common side effects of chemotherapy include: 

• tiredness and feeling weak (fatigue)
• nausea and/or vomiting
• bowel problems (anti-nausea drugs can also cause these)
• sore or dry mouth, or small ulcers in the mouth
• taste changes and/or loss of appetite
• increased risk of anaemia (low level of red blood cells)
• reduced kidney function
• skin rash
• numb or tingling hands or feet (peripheral neuropathy)
• ringing in the ears (tinnitus) or hearing loss
• red and itchy eyes (conjunctivitis). 

You will have medicines (such as anti-nausea drugs) to help control any side effects. If side effects become too difficult to manage, your oncologist can adjust the dose or type of chemotherapy drug used.

While hair loss and scalp problems are rare with chemotherapy for mesothelioma, some hair thinning may occur. Some people have trouble thinking clearly or experience short-term memory loss after chemotherapy, but this usually improves once treatment ends.

If you have the targeted therapy drug bevacizumab, side effects differ to chemotherapy, and may include hypertension, bleeding and blood clots. 

Download our booklet 'Understanding Chemotherapy'

Download our fact sheet 'Understanding Targeted Therapy'

Download our fact sheet 'Peripheral Neuropathy and Cancer' 

Radiation therapy 

Radiation therapy (also sometimes called radiotherapy) is the use of targeted radiation to kill or damage cancer cells so that they cannot grow, multiply or spread. Many other types of cancer may respond well to radiation therapy. It can be more difficult to target radiation therapy for mesothelioma because the cancer is often spread over a large area. However, radiation therapy may still be used at different stages of treatment for pleural mesothelioma and in different ways: 

• as palliative treatment to relieve pain or other symptoms caused by tumours and improve quality of life
• after chemotherapy and surgery (adjuvant radiation therapy) to help kill any remaining cancer cells. 

Having radiation therapy – Treatment is carefully planned to destroy as many cancer cells as possible while causing the least harm to your normal tissue. The initial appointment to map out the treatment (simulation) may take a few hours. You will have CT scans of the affected area, and your skin may be marked with a special ink. This makes sure that the radiation is directed at the same place on your body every time you have radiation therapy. The ink may be permanent, but is only the size of a freckle. Tell someone if you are worried about this.

Radiation therapy is usually every day, Monday to Friday, as an outpatient (you don’t stay in hospital). A session usually lasts about 20 minutes – the radiation therapists have to set up the equipment and position you, but the treatment itself takes only a few minutes. Radiation therapy doesn’t hurt and you aren’t radioactive afterwards. 

The length of the treatment course will vary depending on the purpose of radiation therapy. It might involve 1–10 sessions for up to 2 weeks for palliative treatment, or longer if radiation therapy is combined with other treatments with the aim of long-term control. 

Side effects of radiation therapy – Radiation therapy may cause various side effects during treatment or shortly afterwards, but most side effects go away after the treatment stops. 

Depending on the area of the body being treated, side effects can include: fatigue; peeling, cracked skin that looks red or sunburnt and may be uncomfortable; painful swallowing; or loss of hair in the treatment area. 

Radiation therapy to the chest area can cause difficulty swallowing and symptoms of reflux for a few days or weeks, sometimes leading to weight loss. If high doses of radiation therapy are given to the chest area, it may cause permanent changes (fibrosis) in the lung tissue.

Download our booklet 'Understanding Radiation Therapy'

Trimodality therapy 

Having a combination of chemotherapy, radical surgery and radical radiation therapy to treat mesothelioma is known as trimodality therapy. The aim of having the 3 types of treatment is to remove as much pleural mesothelioma as possible, and stop any remaining mesothelioma cells from growing or spreading. The most effective combination will depend on how you respond to treatment. 

Trimodality therapy is an intensive treatment that is available only in a few centres and it is not commonly recommended. Despite reduced lung capacity afterwards, some people continue to live independently. 

Trimodality therapy may be suitable for people: 

• with a small amount of pleural mesothelioma at an early stage (T1–T3)
• with an epithelioid type of pleural mesothelioma
• whose scans show a good response to chemotherapy before surgery and no signs of pleural mesothelioma progression
• with no signs of spread into the lymph nodes or any other disease on CT and/or FDG–PET scans
• who are able to live independently with one lung
• who are physically fit enough for surgery. 

Your surgeon is the best person to work out if trimodality therapy may be suitable for you. Ask your surgeon or oncologist to explain the likely outcome for you. 

The surgery is a major operation, and not everyone wants to go ahead after the risks and benefits are explained. Sometimes, even if someone seems suitable for intensive treatment, the doctor may adjust treatment if the mesothelioma doesn’t respond well to chemotherapy, is growing quickly or has spread, or if the person becomes too tired or unwell.

The 3 parts of trimodality therapy

1. Chemotherapy

• Several cycles of chemotherapy are given to shrink the tumour.
• A scan then checks the size of the tumour. If it has shrunk, you’ll have surgery in 4–6 weeks. If there is little or no response, you will not have radical surgery. Chemotherapy is usually given before surgery, but some people have chemotherapy after surgery.

2. Radical surgery

• This is either an extrapleural pneumonectomy (EPP) or pleurectomy decortication (PD). An EPP removes the whole lung, while a PD keeps the lung but removes the outer lining of the pleura (parietal pleura) and any visible tumours. Sometimes a smaller operation removes only part of the parietal pleura. Lymph nodes in the centre of the chest that drain the lung are also removed.
• You’ll stay in hospital for 10–14 days, or longer if complications occur. After 6–8 weeks you’ll be able to start radiation therapy.

3. Radical radiation therapy

• Radiation therapy aims to kill any remaining mesothelioma and is delivered using intensity modulated radiation therapy (IMRT). This type of radiation therapy can be accurately shaped around the chest cavity, so higher doses can be delivered directly to the tumour cells while minimising the damage to other organs in the chest and abdomen.
• IMRT is often given after surgery, but may be given before surgery. How long you need radiation therapy will depend on your circumstances.
• Radiation therapy may cause side effects, but most improve after treatment.

Surgery 

It is possible for some people with peritoneal mesothelioma that has not spread to have an operation called a peritonectomy. Surgery is usually followed by chemotherapy. 

Having surgery – In this procedure, the surgeon removes the parts of the peritoneum where the mesothelioma is growing. The amount of surgery needed will vary from person to person. Removing as much of the cancer as possible will help reduce symptoms such as abdominal pain and poor appetite. It will also improve quality of life and increase life expectancy. 

Peritonectomy surgery is long and complex, with recovery taking a long time. Whether this surgery is an option for you will depend on several factors, including your overall health and fitness, and whether the small bowel is cancer-free.

Only a small number of surgeons in Australia perform peritonectomy. You will usually need to get the medical opinion from one of these specialist surgeons if you are thinking about having a peritonectomy. To find their contact details, talk to your treatment team or contact a mesothelioma support organisation. 

Download our booklet 'Understanding Surgery'

Chemotherapy 

Chemotherapy is sometimes used to treat peritoneal mesothelioma. It may be given as a systemic treatment (into the bloodstream) on its own, or before or after surgery. Systemic chemotherapy for peritoneal mesothelioma is similar to that given for pleural mesothelioma.

Having chemotherapy – If you have a peritonectomy, you will have chemotherapy directly into the abdomen. This is known as intraperitoneal chemotherapy and may be given in several ways: 

• HIPEC – Heated intraoperative intraperitoneal chemotherapy (HIPEC) is known as “hot chemotherapy”. It involves heating the drugs to 42.5°C and inserting the solution into the abdomen for 60–90 minutes during the operation.
• EPIC – After surgery, chemotherapy may be delivered into the abdomen through a thin tube. When given soon after surgery as a single course, it is called early postoperative intraperitoneal chemotherapy (EPIC).
• NIPEC – There is evidence that receiving a long-term course of normothermic (normal temperature) intraperitoneal chemotherapy (NIPEC) may offer some benefit. 

Download our booklet 'Understanding Chemotherapy'

Immunotherapy 

This is a type of drug treatment that uses the body’s own immune system to fight cancer. Immunotherapy drugs known as checkpoint inhibitors block proteins that stop immune cells from recognising and destroying the cancer cells. Once the proteins are blocked, the immune cells can potentially recognise and attack the cancer. 

Having immunotherapy – The drugs used are ipilimumab and nivolumab in combination. Immunotherapy for peritoneal mesothelioma is similar to that given for pleural mesothelioma, however evidence of how well it works is limited at this time. 

Download our fact sheet 'Understanding Immunotherapy'

Radiation therapy is rarely used for peritoneal mesothelioma. This is because the doses required to treat the whole abdomen would cause too much damage to surrounding organs. However, radiation therapy can be used for localised symptoms.

It is common to feel tired during and after treatment, and to lack energy for day-to-day activities. Fatigue for people with cancer is different from tiredness, as it may not go away with rest or sleep. You may lose interest in things that you usually enjoy doing or feel unable to concentrate for very long. 

If fatigue is a problem, talk to your treatment team. Sometimes fatigue can be caused by a low red blood cell count (anaemia) or the side effects of drugs, and can be treated. While you can’t always avoid fatigue, you can find ways to improve your energy levels. 

Managing fatigue 

• Set small, manageable goals for the day, and rest before you get too tired.
• Plan breaks throughout the day when you are completely still for a while. An eye pillow can help at these times.
• Ask for and accept offers of help with tasks such as shopping, cleaning and gardening.
• Say no to things you really don’t feel like doing.
• Leave plenty of time to get to appointments.
• Sit down whenever you can.
• Ask your doctor what sort of exercise would be suitable. Even a walk around the garden or block can boost your energy levels.
• Eat nutritious food to keep your energy levels up.
• Consider acupuncture – some people find it helps with fatigue. 

Download our fact sheet 'Understanding Fatigue and Cancer'

Listen to our podcast episode 'Managing Cancer Fatigue'

Getting a good night’s sleep is important for maintaining your energy levels, reducing fatigue, and improving mood. Difficulty sleeping may be caused by pain, breathlessness, anxiety or depression. Some medicines can also disrupt sleep.

If you had sleep problems before the mesothelioma diagnosis, these could become worse. Talk to your doctor about what might be helpful for you. Medicines you are taking may need adjusting or you may need other drugs to help you sleep. Strategies that may be helpful in improving your sleep quality are listed below. 

Getting a better night’s sleep 

• Try to do some gentle exercise daily. This will help you sleep better. Talk to a physiotherapist or exercise physiologist, who can tailor an exercise program, and an occupational therapist, who can suggest equipment to help you move safely.
• Limit or cut out the use of alcohol, caffeine, nicotine and spicy food.
• Avoid television or using computers or smartphones before bed, as the blue light may tell your body it’s time to wake up.
• Follow a regular routine before bed and set up a calm sleeping environment. Make sure that the room is dark, quiet and a cool, comfortable temperature.
• Try soothing music, a recording of rain sounds, or a relaxation recording. 

Listen to our podcast episode 'Sleep and Cancer' 

Listen to our podcast series 'Finding Calm During Cancer'

Shortness of breath, also called breathlessness or dyspnoea, is the most common symptom of pleural mesothelioma. This is often caused by a build-up of fluid in the pleural cavity known as pleural effusion. The fluid can put pressure on the lung, making it harder to breathe. 

In the earlier stages of pleural mesothelioma, controlling this fluid build-up will improve breathlessness. The level of improvement will depend on the health of your lungs before diagnosis, and how well they function after surgery. You may also feel breathless because of the cancer itself not allowing the lung to work properly (trapped lung). 

In peritoneal mesothelioma, a build-up of fluid (ascites) can cause the abdomen to swell. This can be painful, but also puts pressure on the diaphragm and can make you feel breathless. 

Other problems such as infection or a low level of red blood cells (anaemia) can also cause breathlessness. Living with breathlessness can be difficult, but there are ways to reduce its impact on your life and manage it at home. 

Draining fluid around the lungs - Fluid build-up around the lungs may be drained before mesothelioma is diagnosed or at the same time as a biopsy. 

Ways to control fluid around the lungs 

Talc pleurodesis – To prevent fluid building up again in the lining of the lungs, you may have a talc pleurodesis. Pleurodesis means closing the pleural cavity. Sterile talcum powder (talc slurry) is injected into the pleural cavity, and the talc slurry causes an inflammation that helps fuse the 2 layers of the pleura together and closes the space.

A talc pleurodesis is best done during VATS by a thoracic surgeon, but is sometimes done by a respiratory physician. After a talc pleurodesis, some people experience a burning pain in the chest for 24–48 hours. This pain can be eased with medicine and you will be able to have physiotherapy to improve lung expansion. 

Having a pleural tap - In pleural mesothelioma, a pleural tap (also known as pleurocentesis or thoracentesis) drains fluid from around the lungs.

• Your doctor will numb the area with a local anaesthetic and insert a needle between your ribs into the fluid-filled pleural cavity.
• An ultrasound scan may guide the needle to the fluid. The needle is connected to a bag for the fluid to drain into.
• The process of draining the fluid usually takes anywhere between 30 and 60 minutes.
• You usually don’t have to stay overnight in hospital after having a pleural tap.

VATS with pleurectomy decortication – When fluid is drained and talc pleurodesis is done during VATS, part or all of the outer layer of the pleura (parietal pleura) is removed. This is known as pleurectomy decortication (PD). This may be done when the parietal pleura, which lines the chest wall, has become thick and stiff. 

Thoracotomy with pleurectomy decortication – Even after VATS and talc pleurodesis, the fluid may build up around the lungs again, causing breathlessness. The surgeon may suggest a more extensive surgery called thoracotomy (open surgery) with pleurectomy decortication (PD). This surgery may also be recommended as a first option if the cancer has grown in a way that makes it difficult to perform VATS successfully. A thoracotomy helps to prevent fluid building up again in most cases. It also makes it easier for the lungs to expand and to transfer oxygen to the blood. Pain after having a thoracotomy can last longer than pain after having VATS, but the improvement in symptoms may make open surgery a worthwhile option if VATS has not been successful or if it isn’t possible. 

Indwelling pleural catheter – Some people cannot have VATS or open surgery, either because they are too unwell or because the cancer has grown in a way that makes the surgery too difficult. Instead, you may be offered an indwelling pleural catheter (also known as a drain) to remove the fluid and improve your breathing. This can also be used if the pleural fluid builds up again after pleurodesis.

Under local anaesthetic, the specialist inserts a thin tube (the catheter) through the chest wall into the pleural cavity. You can manage the drain at home with the help of a community nurse, family member or friend. When the fluid builds up and needs to be drained (usually once or twice a week), the end of the catheter is connected to a bottle. 

With an indwelling pleural catheter, the fluid may stop building up, and the cavity may close. In these cases the drain can be removed. 

Ways to drain or control fluid in the abdomen 

Peritoneal tap – In peritoneal mesothelioma, a peritoneal tap (also known as paracentesis) drains fluid from the abdomen. Your doctor will numb the area with a local anaesthetic and insert a needle through the skin into the peritoneal cavity. An ultrasound may guide the needle to the fluid. The needle is connected to a bag for the fluid to drain into over a few hours. A peritoneal tap may be done while you are still having tests. You usually don’t have to stay overnight in hospital after a peritoneal tap. 

Indwelling peritoneal catheter – If fluid keeps building up around the abdomen, a small tube can be inserted to allow fluid to flow into a bottle. This is known as an indwelling peritoneal catheter or drain. Under local anaesthetic, the specialist inserts a thin tube (catheter) into the abdomen. You can manage the drain at home with the help of a community nurse, family member or friend. When the fluid builds up and needs to be drained (usually once or twice a week), the end of the catheter is connected to a bottle. 

Heated chemotherapy – To help prevent fluid building up again, you may have a single dose of heated chemotherapy directly into the abdomen (HIPEC) during a laparoscopy.

Improving breathlessness at home 

It can be distressing to feel short of breath, but several simple strategies can help provide some relief from breathlessness at home.

Treat other conditions - Let your doctor know if you feel breathless. Conditions such as anaemia, a lung infection or chronic obstructive pulmonary disease may also make you feel short of breath and these can often be treated.

Sleep more upright - Use a recliner chair or prop yourself up in bed to help you sleep in a more upright position. An occupational therapist may be able to recommend a special pillow for sleeping.

Check if equipment could help - Ask your health care team about equipment to manage breathlessness. You may be able to use an oxygen concentrator at home to deliver oxygen to your lungs. For social outings and medical appointments, you can use a portable oxygen cylinder. If you have a cough or wheeze, you may benefit from a nebuliser, a device that delivers medicine into your lungs.

Relax on a pillow - Rest your head and upper chest on a table with a pillow. Bend from your hips and keep your back straight. This helps to relax your breathing muscles.

Ask about medicines - Talk to your doctor about medicines, such as a low dose of morphine, to ease breathlessness. It is also important to keep any chest pain well controlled because pain may prevent you from breathing deeply.

Modify your movement - Some types of gentle exercise can help but check with your doctor first. An exercise physiologist, physiotherapist or occupational therapist from your treatment centre can explain how to modify your activities to improve breathlessness.

Create a breeze - Use a handheld fan to direct a cool stream of air across your face if you feel short of breath when not exerting yourself. You may also find it helpful to sit by an open window.

Find ways to relax - Listen to a relaxation recording or learn other ways to relax. This can help you to control anxiety and breathe more easily. Some people find breathing exercises, acupuncture and meditation helpful.

Download our booklet 'Understanding Complementary Therapies'

Listen to our podcast series 'Finding Calm During Cancer'

Many people are naturally worried about being in pain. It’s important to tell your treatment team if you are in pain. Pain may be a symptom of mesothelioma, but can also be a side effect of treatment. 

Pain caused by mesothelioma is usually dull and generalised – it can be difficult to say exactly where it is coming from. If the cancer spreads and presses on bones or organs, it may feel sharp and stabbing. A sharp pain in the chest can also be caused by a blood clot in the lungs (pulmonary embolism), so seek urgent medical help if the pain is new. Chemotherapy or surgery can injure nerves causing pain or numbness. 

There are several different ways to control pain. 

Pain medicines – Different types and strengths may be used: 

• mild, like paracetamol
• moderate, like codeine
• strong and opioid-based, like morphine. 

Pain medicines may come as tablets, oral liquids, patches, injections or intravenous infusions. Non-steroidal anti-inflammatory drugs (NSAIDs) or drugs for nerve pain may also be prescribed. Many people need a combination of medicines for good pain control. 

Opioids, such as morphine or oxycodone, are the most common drugs used for moderate-to-severe mesothelioma pain (and may be used for breathlessness). Morphine is available in quick-acting and long-acting forms. Some people worry they might get addicted to morphine. Pain specialists believe this is unlikely if you take it as prescribed to relieve acute pain or for palliative care. Morphine can be taken for a long time and in increasing doses, if needed. It doesn’t have to be saved for when pain is very bad. There are many strong pain medicines similar to morphine, so if one doesn’t work, ask your doctor for other options. A small number of people have difficulty controlling their pain, and a pain management specialist may help find a solution. 

Procedures to manage fluid build-up – Aside from breathlessness, fluid build-up around the lungs or abdomen can cause pain. Various treatments can help drain the fluid and try to prevent it building up again. 

Radiation therapy – This may be used to shrink mesothelioma that is pressing on nerves, bones or major blood vessels and causing pain. Sometimes the mesothelioma can grow through the scar from VATS surgery and produce a lump in the skin. Radiation therapy can reduce the size of the lump and ease any associated pain. 

Chemotherapy – This can reduce the size of the mesothelioma that is causing the pain. 

Debulking surgery – If you are well enough and it is technically possible, surgery may be used to remove the part of the mesothelioma causing pain and other symptoms. This is known as debulking surgery. Talk to your doctor for more information. 

Ways to cope with pain at home

Keep notes on your pain - Describe and track pain in a symptom diary – what it feels like, how intense it is, exactly where it is, where it comes from and goes to, how long it lasts, and if it goes away with a medicine or a heat pack, etc. 

Take it slow - Allow a few days for your body to adjust to the dose of pain medicine and for any drowsiness to improve. 

Report side effects - Let your doctor know if you have vivid dreams, nausea or other side effects after taking a strong pain medicine such as morphine or oxycodone. 

Watch for constipation - Ask your doctor if you need a laxative or stool softener prescribed to prevent or relieve constipation (difficulty passing bowel movements) caused by pain medicines. 

Keep up your medicine - Take pain medicine regularly as prescribed, even when you’re not in pain. It’s better to stay on top of the pain. 

Check your pain plan - Ask your doctor to review your pain management plan regularly. If you have problems, adjusting the dose may help, or you can try other methods of pain relief.

“I couldn’t believe how much better I felt after some pain relief. Everything seemed less stressful and I didn’t feel so angry and upset all the time.” BILL

Download our booklet 'Understanding Cancer Pain'

Listen to 'The Thing about Cancer' podcast episodes on pain 

Having infrequent or difficult-to-pass bowel movements (also called faeces, stools or poo) is known as constipation. Common causes include not getting enough exercise, eating too little fibre, or not drinking enough fluids. Opioid pain medicines, some anti-nausea drugs and some chemotherapy drugs may also cause constipation. 

Severe constipation with abdominal pain, bloating, nausea and vomiting may be signs of a blockage in the bowel (bowel obstruction). This occasionally happens with peritoneal mesothelioma, but rarely with pleural mesothelioma. To relieve the symptoms, you may have a small tube (stent) put in to help keep the bowel open. If the bowel is completely blocked, it needs to be cleared with emergency surgery. 

Managing constipation 

• Drink plenty of fluids.
• Eat fresh fruit and vegetables and fibre-rich foods (e.g. prunes, apples with skin on), unless your doctor advises otherwise.
• Try to be physically active every day. Talk to your doctor or physiotherapist to find the exercise that is right for you.
• Ask your doctor how to manage constipation. You may be prescribed medicines to help stimulate bowel movements.
• Try over-the-counter laxatives such as Coloxyl with senna, Duphalac or Movicol. Check the dose with the pharmacist and let your doctor know. Don’t wait too long before starting laxatives.
• Talk to your treatment team about how to manage bowel obstruction (described above). If your stomach is swollen and you are in pain, call Triple Zero (000) as it may be an emergency.

Some people have little interest in eating and lose weight even before mesothelioma is diagnosed. These symptoms may be caused by the disease itself, or by nausea, trouble swallowing, changes in taste or smell, breathlessness, abdominal pain, or feeling down.

Eating well will help you cope better with day-to-day living, treatment and side effects, and improve your quality of life. 

A palliative care specialist can help manage symptoms that affect your appetite or ability to eat. You may also find it useful to talk to a dietitian who is experienced in treating people with cancer. They can provide helpful eating suggestions. 

Eating when you have little appetite 

• Have small meals and snacks regularly. A large, full plate may put you off eating – try using a smaller plate with smaller portions. Likewise, drink from a half-full glass.
• Eat moist food such as scrambled eggs. Moist food tends to be easier to eat and will cause less irritation if you have a sore mouth.
• Avoid fatty or sugary foods if these make you feel sick.
• Use lemon juice and herbs to add flavour to bland foods.
• Eat more of your favourite foods – follow your cravings.
• Carry snacks so you can eat any time you feel like it. Try muesli bars, dried fruit and nuts, crackers or fruit buns.
• If solid food doesn’t appeal, ask a dietitian about protein drinks or other supplements. 

Download our booklet 'Nutrition for People Living with Cancer'

Listen to our podcast episode 'Appetite Loss and Nausea'

The options described here are usually considered palliative treatment because their main aim is to manage symptoms rather than cure the disease. Your doctor may suggest palliative treatment for any symptoms caused by mesothelioma or refer you to a palliative care specialist. 

Chemotherapy, immunotherapy, radiation therapy and surgery may be used to slow the spread of mesothelioma and control symptoms such as pain or breathlessness. Oxygen and medicines (e.g. benzodiazepines) may also be used to help control symptoms. 

If you have a build-up of fluid around the lungs or abdomen, various procedures can drain the fluid and help prevent it building up again. 

Palliative treatment can be used at any stage of mesothelioma to improve quality of life. In fact, palliative treatment can help some people with mesothelioma to live fulfilling lives with minimal symptoms for longer. Palliative treatment is one aspect of palliative care.  

Understanding palliative care 

Many people fear hearing the words palliative care because they think it is just for people who are dying, but it’s not. Palliative care is useful at all stages of advanced cancer and involves a range of services that can help with many things like pain management or getting around more easily.

What is a palliative care? Palliative care is person-centred care that helps people with a progressive life-limiting illness to live as fully and as comfortably as possible. Palliative care can link you with support. For example, you may need help to move around your home more safely. The main goal is to help you maintain your quality of life by identifying and meeting your physical, emotional, cultural, social and spiritual needs. It also provides support to families and carers.

Who is in a palliative care team? Palliative care may be led by your GP or community nurse, or by the specialist palliative care team in your area. The team may include doctors, nurses, social workers, physiotherapists, occupational therapists, and spiritual care practitioners. They may also link you to a counsellor, psychologist or other health professionals.

Where is palliative care usually given? The palliative care team will help you to work out the best place for your care. This may be in your own home supported by community palliative care services, in hospital, at a residential aged care facility or in a palliative care unit (sometimes called a hospice). Many health care services are now available to you at home.

How can palliative care help? Palliative care involves a range of services that will be tailored to your individual needs. There are various ways it can help, including: 

• relief of pain, breathlessness, nausea and other symptoms
• help organising equipment for home (e.g. wheelchairs, special beds)
• links to other services such as home help and financial support
• referrals to respite care services
• volunteer services trained in palliative care
• counselling, grief and bereavement support.

When can I start? Depending on your needs, you may use palliative care services occasionally or continuously, for a few weeks or months. The number of people receiving palliative care for several years is increasing. Contacting the palliative care team early means that you can find out what the different team members do and see which services might be useful now or in the future. This will vary according to how you feel, what problems you have, and how your carers are managing.

Where to find out more - For more information about what palliative care is and how it helps, visit Palliative Care Australia. Use the directory on this website to find a palliative care service in your local area, or speak to your doctor or nurse.

Download our booklet 'Understanding Palliative Care'

Download our booklet 'Living with Advanced Cancer'

Listen to our podcast series 'The Thing About Advanced Cancer' 

“My husband did not want to accept help from the palliative care people. He said that once they got involved he would not have much longer left to live. But his GP told him about what they do and how they help with symptoms and comfort. He agreed to try and now would not be without them.” GRACE

As treatment and symptom management for mesothelioma are likely to be ongoing, you will have regular check-ups to monitor your health. Timing differs from person to person and depending on treatments. Some people may see a doctor every 3 weeks, others every 6–8 weeks. 

During check-up appointments, your doctor will do a physical examination and may also arrange a CT scan to see how active the mesothelioma is. What other tests you have, and who you see and where, will depend on your health and the type of treatment you have had. At your check-ups, you will also be able to discuss how you are feeling and mention any concerns you may have. 

If you live a long way from the hospital or treatment centre, you may be able to have some tests done by your GP or another specialist. 

Between appointments, if you notice any change in your symptoms or you experience side effects from treatment, you should contact your doctor as soon as possible. You don’t have to wait until the next scheduled appointment.

For people with mesothelioma, the disease will come back even if it responds well to initial treatment. This is called recurrence, relapse or disease progression. How long this takes is different for everyone. 

When mesothelioma comes back, you and your doctor will need to consider what treatment to use and how to control symptoms. Treatment options available to you will depend on symptoms you are experiencing, as well as your general health, and may include:

• radiation therapy to reduce the size of the regrowth and pain
• more chemotherapy or immunotherapy
• further surgery
• participating in a clinical trial that is testing new drugs.

You may have these cancer treatments as part of palliative care. At some point, you may decide to stop treating the cancer and focus on managing symptoms and maximising your quality of life. Your cancer care and palliative care teams can help you to understand your treatment options so that you can make well-informed decisions. 

Download our booklet 'Understanding Palliative Care'

Download our booklet 'Living with Advanced Cancer'

Download our booklet 'Facing End of Life'

Listen to our podcast series 'The Thing About Advanced Cancer'

The role of hope 

A diagnosis of advanced cancer does not mean giving up hope. People with mesothelioma often have many good months or years ahead of them and can continue to enjoy various aspects of life, including spending time with their families and other people who are important to them. 

As the disease progresses, the things that are hoped for tend to change. For example, a person may feel it is more important to focus on living comfortably for as long as possible or being able to celebrate a particular event. You can embrace these hopes while acknowledging the reality of the situation.

“I think more than anything else, I have learnt how important it is to have hope. Without hope there really is nothing.” SERAFINA

Making plans for the future may help put your mind at ease and let you focus on treatment or living. Advance care planning lets you look at your future health and legal options and know that what you want is recorded in case it’s needed. 

You can legally appoint someone to make decisions for you if you lose the ability (called capacity) to make your own decisions – for example, if you become too sick. Depending on where you live, the documents for appointing this person may have different names, including an Enduring Power of Attorney, Enduring Power of Guardianship, or Appointment of Enduring Guardian. 

You can also outline your treatment goals and what you want for your future medical care in an official document called an Advance Care Directive. These documents are all part of advance care planning. 

It may be worth getting legal advice to be sure that your will is up to date and that what you want to happen to your estate (house, car, investments, etc.) is clear. 

Cancer Council may be able to help refer some people to a lawyer for help with wills and advance care planning. These services may be free for people who can’t afford to pay. Call 13 11 20 to find out what services are available in your area and whether you are eligible for free legal assistance. 

Download our booklet 'Living with Advanced Cancer'

Download our booklet 'Cancer Care and Your Rights'

A common law claim is brought against the party or parties (the people or organisations) who caused you to be exposed to asbestos. These are called the defendants. 

A common law claim begins by filing a formal court document known as an “originating process”. The originating process must be lodged within your lifetime to protect your entitlement to compensation. This means that your estate will still be able to continue with your claim if you die before it is finalised. 

If you’d like to make a claim, it’s important to speak with a lawyer experienced in asbestos-related compensation claims as soon as possible after your diagnosis. 

If you’re too unwell to see a lawyer in their office, they may be able to visit you at home or in hospital to discuss the process and how it can be simplified for you and your family. 

It may still be possible to bring a common law claim even if you: 

• were exposed to asbestos many years ago
• no longer work for the employer where you were exposed
• have worked for many employers
• were self-employed or a contractor at the time of exposure
• worked for an employer who is no longer in business
• are, or were, a smoker
• were exposed to asbestos in another state or overseas
• were not exposed in the workplace
• were only briefly exposed to asbestos
• were exposed to asbestos on more than one occasion
• don’t know how you may have been exposed to asbestos.

Some states and territories have special government compensation schemes for people who develop mesothelioma and other asbestos related diseases while at work. Contact the relevant organisations below for more information.

State and territory compensation schemes 

South Australia - ReturnToWorkSA  13 18 55

Australian Capital Territory - Default Insurance Fund  (02) 6207 0184

New South Wales - Dust Diseases Care  1800 550 027 

Northern Territory NT - WorkSafe  1800 250 713 

Queensland - WorkCover Queensland  1300 362 128

Tasmania - WorkSafe Tasmania  1300 366 322

Victoria - WorkSafe Victoria  1800 136 089 

Western Australia - WorkCover WA  1300 794 744 

Commonwealth - Comcare  1300 366 979 

Do I need legal help? 

You, and sometimes your dependants, can lodge a statutory claim directly with the authority in your state or territory. But most people with mesothelioma find it can be easier to use a lawyer to arrange all their claims. The laws around Australia vary and can be complex. Some people may be entitled to bring a common law claim instead of, or as well as, a statutory claim. It is vital to consult an expert asbestos lawyer before applying for statutory benefits to make sure that you aren’t excluded from also claiming common law compensation.

How can I find a lawyer? 

Use the “find a lawyer” search on your local law society website: 

SA – Law Society of South Australia

NSW – The Law Society

QLD – Queensland Law Society

VIC – Law Institute of Victoria

TAS – Law Society of Tasmania

WA – Law Society of Western Australia

NT – Law Society Northern Territory 

ACT – ACT Law Society

Mesothelioma legal claims are a specialised area. It’s important to talk to a lawyer or law firm experienced in this area, as they often have the appropriate information about how and where asbestos was used. 

An experienced lawyer may reduce the time it takes to investigate a claim. They also understand what you are coping with and may work around medical appointments to try to make things less stressful for you.

How long will a common law case take? 

Most common law claims for mesothelioma are settled out of court through a process called mediation. This can happen within a few months to a year of the claim being lodged. If your prognosis is poor, or you suddenly become very unwell, the process may be sped up to try to ensure that your common law claim is resolved in your lifetime. Very few cases actually proceed to a court trial. 

What if I die before my claim is settled? 

Many people diagnosed with mesothelioma worry that their claim won’t be finalised before they die. The largest component of compensation is usually the general damages. So long as you start a common law claim in your lifetime, then your entitlement to general damages is protected, and your estate would be able to continue with your claim if you die before your claim is finalised. 

In some circumstances, your family may also be entitled to dependency entitlements if you die because of the mesothelioma. Your lawyer will let you know if this applies to you and your family. 

How much does legal action cost? 

Legal costs generally depend on the amount of legal work required to resolve your case. Most lawyers who specialise in asbestos-related compensation claims offer a “no win, no fee” agreement. This means that the lawyers will only charge for legal services if they are successful in resolving your case. 

You are also entitled to claim a large portion of your legal costs from the defendants as part of your common law claim. The amount of costs awarded will depend on whether your case was resolved at mediation or at trial.

Ask your lawyer for a costs agreement, and ask them to explain what is involved. Be aware that even under a “no win, no fee” agreement, if you: 

• start a claim but decide to not continue with the action, you will usually need to pay any legal costs up to that point
• proceed but lose the court case, you will not need to pay your lawyer, but you may still need to pay court costs for yourself and possibly for the defendant
• are successful, a significant portion of your compensation might be absorbed by any costs that the defendant doesn’t have to pay.