Mesothelioma

About mesothelioma

Mesothelioma is a type of cancer that starts from mesothelial cells. These cells line the outer surface of most of the body’s internal organs, creating a protective layer called the mesothelium. Some mesotheliomas form a mass (tumour), while others grow along the mesothelium and form a thick covering.

The main cause of mesothelioma is exposure to asbestos fibres or asbestos dust. It usually takes around 40 years after exposure to asbestos for a person to develop mesothelioma, but it may take 10 - 60 years.

Australia has one of the highest rates of mesothelioma in the world, with 900 Australians diagnosed each year. Men are 4 times more likely than women to be diagnosed with mesothelioma and it is more common in people over the age of 65.

Types of mesothelioma

Pleural mesothelioma

The most common form of mesothelioma is pleural mesothelioma, which develops in the mesothelium of the lungs. Although pleural mesothelioma involves the lining of the lungs, it is not lung cancer and it diagnosed and treated differently.

About 95% of mesotheliomas are in the chest.

Peritoneal mesothelioma

The second most common form of mesothelioma is peritoneal mesothelioma, which develops in the mesothelium that lines the walls and organs of the abdomen and pelvis.

Less than 5% of all mesotheliomas are in the abdomen and pelvis.

Other forms of mesothelioma

Rarely, mesothelioma occurs in the pericardium, the lining of the heart. This is called pericardial mesothelioma.

Even more rarely, mesothelioma can occur in the membrane around the testicles. This is called testicular mesothelioma.

Signs and symptoms of mesothelioma

The first signs of mesothelioma are often similar to other conditions and the symptoms may come and go. It may take some time to be diagnosed as more common conditions are likely to be investigated first. You should always let your GP know if you may have been exposed to asbestos in the past.

The symptoms for pleural mesothelioma may include:

• shortness of breath, 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, made worse by breathing in deeply, or dull and persistent
• extra sensitive skin or change in skin sensation
• general symptoms such as loss of appetite with weight loss, loss of muscle bulk, fatigue or loss of energy, a persistent cough or change in coughing pattern, and night sweats.

The symptoms for peritoneal mesothelioma may include:

• abdominal pain
• a swollen abdomen
• poor appetite
• nausea and vomiting
• night sweats or fever
• bowel or urinary problems.

Not everyone with these symptoms has mesothelioma. If you have any of the symptoms or are worried, always see your doctor.

Risk factors for mesothelioma

There are some things that can make it more likely to develop mesothelioma, these are called risk factors.

The primary risk factor for mesothelioma is exposure to asbestos fibres or asbestos dust. Asbestos was used in many building products in Australia from the 1940s until 1987. As a result, people at the highest risk of developing mesothelioma are those who may have worked with asbestos including:

• asbestos cement manufacturing workers
• asbestos miners
• automotive industry workers
• boilermakers and welders
• builders
• gasfitters and electricians
• insulators
• mechanics
• metal-fitters
• plumbers
• steelworkers
• telecommunications technicians
• textile workers
• transport workers (especially waterside workers)
• turners and toolmakers.

Others at risk include people cleaning work clothes with asbestos fibres on them, or people spending time in areas where asbestos has been disturbed during home renovations or maintenance.

Whilst most cases of mesothelioma are caused by exposure to asbestos, there are some cases where there is no clear link to asbestos.

Tests for mesothelioma

Mesothelioma can be difficult to diagnose as the symptoms are often the same as those of other health problems, and mesothelioma cells can be difficult to identify.

Your doctor may do some tests to check for mesothelioma. If you think you have been exposed to asbestos in the past, it is important that you tell your doctor as many doctors won’t automatically suspect mesothelioma.

Some of the tests you may have are:

• blood test
• x-ray
• CT scan
• biopsy
• PET scan.

There are other, less common tests that you may have to determine if you have mesothelioma. Your doctor will discuss these with you.

Stages of mesothelioma

The stage of a cancer means how far it has grown in your body. There are different systems that are used to determine the stage of pleural mesothelioma and peritoneal mesothelioma.

Pleural mesothelioma

The most common way doctors decided on a stage for pleural mesothelioma is the international tumour-node-metastasis (TNM) staging system. Each category is given a score, the higher the number the further the pleural mesothelioma has grown:

• T (tumour) – describes if the pleural mesothelioma has grown in and beyond the pleural cavity. A score of 1 to 4 is given.
• N (node) – describes if the pleural mesothelioma has spread to the lymph nodes. A score of 0 to 2 is given.
• M (metastasis) – describes if pleural mesothelioma has spread to other parts of the body. A score of 0 to 1 is given.

Peritoneal mesothelioma

The most common way doctors decided on a stage for peritoneal mesothelioma is 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.

Prognosis and survival rates for mesothelioma

Mesothelioma behaves differently in different people. It is often present for many months before being diagnosed at an advanced stage, which will affect prognosis. 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 is not always useful for working out prognosis for people with mesothelioma. This is partly because it is hard to predict how quickly mesothelioma will grow.

In general, the earlier cancer is diagnosed, the better the outcome. If the cancer has advanced to a point where it is difficult to treat successfully, the priority will be to relieve symptoms and improve your quality of life.

Treatment for mesothelioma

A range of treatments are recommended for people with mesothelioma. These aim to control the cancer and can include chemotherapy, immunotherapy, radiation therapy or surgery, which may be used alone or in combination. The different types of mesothelioma are treated in different ways.

Your specialist will discuss your treatment options with you, and these will depend on several factors including:

• the location, stage and type of mesothelioma, which helps estimate the likelihood of response to treatment
• your age, health and fitness
• your family circumstances and support
• your preferences.

Pleural mesothelioma

Chemotherapy

Chemotherapy uses drugs to kill or slow the growth of cancer cells while causing the least possible damage to healthy cells.

The main chemotherapy drugs for pleural mesothelioma are pemetrexed in combination with cisplatin or carboplatin. Research shows this combination can give improved results compared with using a single drug.

The goals of chemotherapy also is usually to shrink the cancer, reduce symptoms and improve quality of life. However, chemotherapy doesn’t work for some people.

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.

Immunotherapy is a relatively new treatment for mesothelioma. However, it is now commonly used for most people who are fit enough to have any type of treatment.

Radiation therapy

Radiation therapy is the use of targeted radiation to kill or damage cancer cells so they cannot grow, multiply or spread. Treatment is carefully planned to destroy as many cancer cells as possible while causing the least harm to your normal tissue.

Radiation therapy may be used at different stages of pleural mesothelioma treatment 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.

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 3 types of treatment is to remove as much pleural mesothelioma as possible and stop any remaining mesothelioma cells from growing or spreading.

Trimodality therapy is an intensive treatment and it is only available in a few specialist centres. Despite reduced lung capacity afterwards, some people continue to live independently. Studies are promising, but there are no results comparing trimodality therapy with less intensive treatment.

Peritoneal mesothelioma

Surgery

It is possible for some people with peritoneal mesothelioma that has not spread to have an operation called a peritonectomy, which involves the surgeon removing the parts of the peritoneum where the mesothelioma is growing. The amount of surgery needed will vary between people and it is usually followed by chemotherapy.

Peritonectomy surgery is complex and recovery can take a long time. Only a small number of surgeons in Australia perform this 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. If you have a peritonectomy, you will have chemotherapy directly into the abdomen.

Immunotherapy

Immunotherapy for peritoneal mesothelioma is similar to that given for pleural mesothelioma, however evidence of how well it works is limited at this time.

Side effects of treatment

All cancer treatments can have side effects. Your treatment team will discuss these with you before you start treatment. Talk to your doctor or nurse about any side effects you are experiencing. Some side effects can be upsetting and difficult, but there is help if you need it. Call Cancer Council Tel. 13 11 20 or contact cancer support to speak with a caring cancer nurse for support.

Managing lifestyle changes from mesothelioma

Fatigue

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 cannot always get rid of fatigue, you can find ways to improve your energy levels.

Difficulty sleeping

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.

Breathlessness

Shortness of breath, also called breathlessness or dyspnoea, is the most common symptom of pleural mesothelioma. It is often caused by a build-up of fluid in the pleural cavity known as a 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.

In peritoneal mesothelioma, a build-up of fluid can cause the abdomen to swell. This can be painful, but also puts pressure on the diaphragm and can make you feel breathless. Ask your treatment team about ways to control and drain fluid around your lungs and abdomen.

Pain

Pain may be a symptom of mesothelioma, but can also be a side effect of treatment. The pain caused by the mesothelioma itself 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 other organs, it may feel sharp and stabbing. A sharp pain in the chest can also be caused by a blood clot in the lungs, so seek urgent medical attention if the pain is new. Chemotherapy or surgery can injure nerves and cause pain or numbness.

Emotions

Most people will experience strong emotions after a cancer diagnosis, not only when they first hear that it's cancer, but also at various times during and after treatment.

Cancer is a serious disease, the treatment may take a long time and can be demanding, and there are many periods of waiting and uncertainty. There is no right way to feel – experiencing a range of emotions is normal. The intense feelings may be constant, or they may come and go. You may find that some pass with time, while others last longer. At times, it may feel like you're on an emotional roller-coaster.

Everyone is different, and you need to deal with the diagnosis in your own way. As you navigate this challenging time, it may be reassuring to know that your reactions are natural, there are different ways to manage the emotional impact, and support is available.

You may also experience constipation, a lack of appetite and weight loss. Find out more about managing mesothelioma symptoms or ask your treatment team for further information. You can also call Cancer Council Tel. 13 11 20 to speak with an experienced cancer nurse.

Sexuality

Having mesothelioma and treatment can change the way you feel about yourself, other people, relationships and sex. These changes can be very upsetting and hard to talk about. Doctors and nurses are very understanding and can give you support. You can ask for a referral to a counsellor or therapist who specialises in body image, sex and relationships.

Living with advanced cancer

For many people, mesothelioma is diagnosed at an advanced stage, and the main aim of treatment is to manage symptoms and keep them under control for as long as possible. Treating symptoms will help improve your quality of life. Treatment may slow tumour growth and make you feel better and help you live longer. This is called palliative treatment.

Many people think that palliative care is for people who are dying but palliative care is for any stage of advanced cancer. There are doctors, nurses and other people who specialise in palliative care.

Palliative treatment may be given alone or in combination with chemotherapy, radiation therapy or immunotherapy. It can help in these ways:

• Slow down how fast the cancer is growing.
• Shrink the cancer.
• Help you to live more comfortably by managing symptoms, like pain.

Treatment depends on:

• where the cancer started
• how far it has spread
• your general health
• your preferences and what you want to do.

Ask your doctor about treatment and palliative care services that may help you.

Compensation for mesothelioma

Some people who develop mesothelioma due to asbestos exposure may be able to claim compensation. Your legal entitlements will depend on the state or territory in which you were exposed to asbestos. In some cases, the exposure may have occurred overseas.

Mesothelioma takes a long time to develop, so you may have been exposed to asbestos some 40 years ago. You might think it was a minor exposure, or you may not remember any exposure.

Generally, a person diagnosed with mesothelioma has 2 different types of legal entitlements:

• a claim through the court, known as a common law claim
• a claim under a government compensation scheme, known as a statutory claim.

It is important to talk to a lawyer or law firm experienced in this area of work. They will explain what compensation you may be able to claim and help make the process easy for you to understand.

You can get financial and legal support from Cancer Council by calling Tel. 13 11 20.

Support for carers, family and friends

Caring for someone with cancer can be difficult sometimes. If you are caring for someone with mesothelioma, these organisations can help:

• Cancer Council – Information and support line on Tel. 13 11 20 (or 13 14 50 for an interpreter)
• Carer Gateway Tel.1800 422 737
• Carers Australia Tel. 1800 422 737

Where to get help

• Your GP (doctor)
• Cancer Council
  • Information and support line on Tel. 13 11 20 (or 13 14 50 for an interpreter)
  • Mesothelioma
  • Guide to best cancer care for pleural mesothelioma
  • Guide to best cancer care for peritoneal mesothelioma
  • Living with advanced cancer
  • Legal and financial pro bono services
  • Podcasts
  • Cancer Council Victoria, My Cancer Guide - Find support services that are right for you.
• NURSE-ON-CALL Tel. 1300 60 60 24
• Lung Foundation Australia Tel. 1800 654 301
• Asbestos Council of VictoriaTel. (03) 5127 7744
• Palliative Care Australia Tel. (02) 6232 0700
• Palliative Care Victoria Tel. (03) 9662 9644
• Australian Mesothelioma Registry Tel. 1800 378 861
• Work Safe Victoria Tel. 1800 136 089 – for further information on compensation and to make a claim
• Asbestos Diseases Foundation of Australia Tel. 1800 006 196
• Asbestos Diseases Society of Australia Tel. 1800 646 690
• Bernie Banton Foundation
• Asbestoswise