About mesothelioma
What is mesothelioma?
The link with asbestos
Who is at risk?
What are the symptoms?
How is it diagnosed?
How does mesothelioma develop?
What is the treatment?
Take care of your feelings
Compensation and benefits
Glossary
Further sources of information
Mesothelioma, also called 'malignant mesothelioma' is pronounced 'mee-zoh-thee-lee-oh-mah'. It is sometimes called 'meso' for short, by people who have, or work with, the disease. But people generally use the full name.
Mesothelioma is one of the more difficult diseases that people, their doctors, friends and families have to face. It is a form of cancer, almost always caused by exposure to asbestos many years ago.
Mesothelioma is complicated. So is diagnosing and treating it. There are a lot of technical terms that you might hear from your doctor or nurse.
We have listed some of these in the glossary. You might find it helpful to take this booklet with you when you go to see your specialist.
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Mesothelioma is a type of cancer. It happens in the 'mesothelium' - a thin lining in your chest and your abdomen.
Mesothelioma in the chest
Your chest lining has two layers. The inner layer lines your lung, and the outer layer lines your chest wall. The space between the two layers contains a small amount of fluid. This lubricates the two surfaces and lets the lung and chest wall move and expand as you breathe. When a tumour grows within the chest lining, it causes it to thicken at first. Then it spreads within the space between the layers. The tumour often produces fluid, sometimes several litres.
Mesothelioma in the abdomen
Your abdominal cavity (the bit below your diaphragm) and bowel are also covered by a lining. Like your chest lining, it has two layers. The inner layer covers the organs in your abdomen (your stomach, etc), and the outer layer lines the wall of your abdomen. A tumour can start within this lining. It causes the lining around the organs in your abdomen to thicken. Lots of fluid can also be produced, which causes swelling of the abdomen.
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The connection between mesothelioma and asbestos was discovered in 1960. By 1960, the production and use of all forms of asbestos had increased world-wide. It continued to grow for at least 15 more years. This has been reflected by widespread cases of mesothelioma, 30 to 40 years later.
It wasn't until the mid 1970's that the dangers of asbestos became generally recognised and action was taken: the use of asbestos within industry began to be phased out, and Health and Safety regulations were updated.
Asbestos is the cause of over 90 per cent of cases of mesothelioma. The other causes of the disease are not fully understood. Smoking does not cause mesothelioma. Neither does exposure to modern fire-resistant materials (like fibreglass).
Types of asbestos
All types of asbestos can cause mesothelioma if you breathe in or swallow the fibres. Blue and brown asbestos are known to be the most dangerous. White asbestos does increase the risk of mesothelioma, but is not as strong. Another fibre called tremolite may also be a cause.
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Initially mesothelioma mainly affected:
- laggers
- thermal insulation engineers
- shipyard workers
- asbestos manufacturing workers
- women who assembled gas masks during the war
However, recent cases show that:
- building workers
- plumbers
- gas fitters
- carpenters
- electricians
are now the largest high-risk group.
People who come across asbestos while doing DIY (getting rid of an old boiler, for example), are also at risk. Some other people have a lower risk of mesothelioma, if they have come into contact with asbestos, but not directly in their work. For example:
- People working in places where other workers are handling asbestos
- People who have washed worker's overalls
- People who lived and played near asbestos factories when they were children
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The most common symptoms are:
- breathlessness due to build-up of fluid
- chest pain
but sometimes people discover they have mesothelioma when they go to their GP because of:
- weight loss/loss of appetite
- fever/night sweats
- pain and/or swelling in their abdomen
- unexplained tiredness
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If you have been in contact with asbestos, and a chest x-ray shows a build-up of fluid, then you will probably have further tests to confirm (or rule out) that you have mesothelioma. It can be difficult to be certain of a diagnosis of mesothelioma. The doctor will need to examine some fluid and/or tissue. They will take a sample by one of these methods:
- By inserting a needle into the fluid between the layers of the lining in your chest/abdomen. Then the doctor will drain the fluid using a syringe, or take a small sample of tissue using a special needle.
- If there is a lot of fluid and it is causing symptoms, the doctor can drain it off slowly under local anaesthetic.
- By inserting a needle directly into the tumour tissue to suck out some tumour cells, or take a small sample.
- You have a general anaesthetic, and a surgeon uses an 'endoscope'. The endoscope is a piece of equipment with a light and camera at its tip, and a channel which allows the doctor to remove fluid or take a sample of tissue. This is becoming the test that doctors prefer to use.
NB: it may take a few days for your test results to come through. Before you go home after your test, you should make sure you have a follow-up appointment.
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Mesothelioma usually spreads slowly, taking the path of least resistance. This is initially within the space between the layers of the lining of your chest/abdomen. In later stages, the tumour can grow to be very large. Mesothelioma does not usually spread around the body like other cancers sometimes do.
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If you are diagnosed with mesothelioma, the next step is to find out what stage the disease is at. This is done using a scan called a CT scan.
For treatment, a team including doctors and nurses who are specialists in various areas of cancer care, will study your individual case to consider what treatment is most appropriate. They will take into account:
- The type of the mesothelioma (chest or abdomen)
- How developed it is
- Your age and general health
- Your symptoms
- And, lastly but most importantly, what you want to do about your treatment.
There is no cure for mesothelioma at the moment. If it is caught very early it can sometimes be removed by surgery. Unfortunately, this is rare. The usual treatment for mesothelioma is based on 'active symptom control' .
Active Symptom Control (ASC)
Active Symptom Control directs treatment specifically at your symptoms. The symptoms that are likely to need controlling are:
- breathlessness
- pain
- lack of energy
- lack of appetite
- constipation due to pain killers
- anxiety and depression
Treatment with steroids, various levels of painkillers, drugs to improve appetite, laxatives and drugs to improve the breathing may all help.
Managing fluid in your chest
The fluid that can build up in your chest can be removed on a regular basis. But it can become more and more difficult to do this.
Your doctors may try to stop the fluid accumulating altogether. This involves putting talc or another chemical into the space between the two layers of the chest lining once all the fluid has been drained off. This causes the two layers to stick together, so there is nowhere for fluid to collect. (This talc is a special type of the talc which you may know as an ingredient in talcum powder. It has also been sterilised.)
Surgery
Surgery to remove tumours has had varying success. Trials are underway at the moment for an operation that would remove the whole of the affected lung (along with its linings, the lining of the heart and part of the diaphragm). This operation is only suitable for a very small number of people.
Radiotherapy
Radiotherapy treats cancer by using high-energy x-rays to destroy cancer cells. For mesothelioma, radiotherapy can be used in these ways:
- If you have had a needle, drain or endoscope inserted into your chest a single dose or a short course of treatment of radiotherapy is given there to stop the tumour growing through your chest wall and into your skin
- Radiotherapy can be aimed directly at the tumour to try and make it smaller.
This will help reduce pain and discomfort, and possibly breathlessness.
Chemotherapy
This is treatment with drugs; directly into your veins and/or in pill form. The aim is to kill or control the growth of cancer cells, which would help with your symptoms and improve your quality of life.
Doctors use a variety of drugs in chemotherapy - and there is one drug, Alimta (Pemetrexed), that has been licensed to treat mesothelioma in particular. But chemotherapy will not benefit everyone, and will usually only be considered if you are generally fit and strong.
You should talk with your doctor or specialist lung cancer nurse about the benefits and disadvantages of chemotherapy.
No cure for mesothelioma has yet been found but the search goes on and new drugs and new combinations continue to be tested.
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If you are diagnosed with mesothelioma, it can be traumatic. And being treated for mesothelioma, as with other cancers, can be difficult too.
You may feel shock, fear, disbelief, anger, loneliness or resentment. You may feel like all you want is to be left alone. You may find it hard to accept that you have mesothelioma at all. You may feel angry and bitter that you have a disease just because of where you worked. If you are a friend, relative or family member of someone who has been diagnosed with mesothelioma, you may feel many of the same emotions.
It is better for everyone if you all talk about your feelings - when you are ready to.
You can also talk with your specialist cancer nurse. She or he can also help you find more specialist help with a counsellor or psychologist if you'd like that.
Some GP practices have a counsellor attached. And your GP can also tell you if there are community-based cancer nurse specialists in your area.
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If you are diagnosed with mesothelioma, you and your family can get financial assistance. You can do this in two ways:
- By claiming Industrial Injuries Disablement Benefit, or through the War Pensions Scheme.
- By suing for damages, or claiming a lump sum.
It is a good idea to seek advice quickly, either from the British Lung Foundation helpline on 08458 50 50 20, your local Citizens Advice Bureau, or from a specialist solicitor (call the Law Society).
Industrial Injuries Disablement Benefit (IIDB)
Mesothelioma is recognised by the Department of Work and Pensions (DWP) as an industrial disease. If you came into contact with asbestos in paid employment after July 1948, you are entitled to a state pension.
To claim IIDB You should contact your local Jobcentre Plus, or ring the DWP enquiry line (0800 88 22 00) and ask to be sent form B1 100PN.
You may need some help with completing the form. You may also want to ask a relative, a social worker, a trade union representative or your doctor for help and advice. You will be asked for a detailed employment history, and to say when you were exposed to asbestos.
The form mentions 'prescribed diseases'. These are diseases the DWP counts as industrial diseases. Mesothelioma is 'Prescribed disease D3', or PD D3.
Your claim should go through quickly. The first requirement is for the DWP to confirm your diagnosis.
To help speed up the process, you can either:
- Get a written report from your specialist confirming your diagnosis.
- Get a form B1 100PN(A) signed by your specialist respiratory or BLF nurse.
Providing you qualify for the benefit, you should get 100% Disability Benefit. In 2006, this is approximately 120 per week.
War Pensions Scheme
If you have mesothelioma because you came into contact with asbestos when you were in the armed forces, you should make a claim with the War Pensions Agency (your local office will be in the phone book). Or you can call the Veterans Agency Helpline (0800 169 22 77).
Please note: you can receive either Industrial Injuries Disablement Benefit or a War pension, but not both.
Other Benefits
If you get IIDB you should ask for the Benefits Agency leaflet SD1 "Sick or Disabled". This will give you full details of the following benefits that you may be eligible for and should claim for:
- Statutory Sick Pay or Incapacity Benefit
- Constant Attendance Allowance
- Severe Disablement Allowance
- Disability Living Allowance (mobility)
- Income Support
- Housing Benefit/Council Tax
Your carer/partner, and/or children may also be able to claim for certain benefits to reflect the help they are giving you.
Suing for damages
You may claim damages from an employer by suing them for negligence. You will need to show that:
- Your mesothelioma was most probably caused by exposure to asbestos at work
- Your employer at the time did not maintain the standards required by law (i.e. they were negligent).
This is a specialised area of the law and you should seek the advice of a specialist solicitor.
If you are a union member, they may be able to recommend an experienced solicitor. Otherwise, the Law Society has a list of specialist solicitors. You can call them on 0870 606 6575.
The cost of making a claim may be covered by your trade union or your professional body. If not, your solicitor may be prepared to take your case on a 'no win, no fee' basis (then you may have to pay a one-off insurance premium). Your solicitor might also be able to claim your costs from your employer. Your claim can still be made even if your employer is no longer in business. Your solicitor will make the claim against your employer's insurers. If you are awarded damages, the final amount is based on a combination of:
- compensation for pain and suffering (and interest on that)
- loss of earnings (and interest on that)
- care costs other expenses (like modifying your home)
- compensation for bereavement
The Pneumoconiosis etc. Worker's Compensation Act (1979) If your solicitor can't find your employer or their insurers, you may be able to get a lump sum under an Act of Parliament called 'the Pneumoconiosis etc. Worker's Compensation Act (1979)'. Your solicitor or local Jobcentre Plus can help you with this.
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Term
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Meaning
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abdomen
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the part of your body between your diaphragm and your pelvis
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amosite
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brown asbestos
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ascites
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build-up of fluid between the layers of the lining in your abdomen
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biopsy
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a sample of tissue
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chrysotile
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white asbestos
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crocidolite
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blue asbestos
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CT scan
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a very high quality scan (CT stands for ‘Computed tomography’)
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extra-pleural pneumonectomy
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surgery to remove the whole of a lung affected by mesothelioma (along with its linings, the lining of the heart and part of the diaphragm)
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endoscope
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a thin flexible instrument with a light and camera on the end, so the doctors can see what they are doing inside your body. It also has a channel to remove fluid. It is used for collecting samples.
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fine needle aspiration (fna)
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this is when a normal needle or a special biopsy needle is inserted directly into the tumour tissue to suck out some tumour cells, or take a small biopsy. The needle is positioned with the help of either CT scanning or ultra-sound, and you have a local anaesthetic. This is the same as a ‘tru-cut biopsy’.
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laparoscopy
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a test where an endoscope is inserted into your abdomen to take a sample of fluid.
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malignant
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a malignant tumour is one which is growing, so if it is left alone, it can be fatal.
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membrane
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a thin lining, like the one in your chest or abdomen
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mesothelium
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a thin lining in the chest – it has two layers
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parietal pleura, parietal layer
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the layer of the mesothelioma (lining) that lines the chest wall
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peritoneum
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a thin lining in the abdomen – it has two layers
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peritoneum mesothelioma
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mesothelioma affecting the peritoneum
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peritoneal aspiration and biopsy
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a test where a needle is inserted into the space between the layers of the lining in your abdomen to draining the fluid using a syringe. A special needle can be used, known as an Abraham’s needle, which can take a small biopsy.
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peritoneal drain
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this is when a needle is inserted into the space between the layers of the lining in your abdomen to drain off the fluid that has collected.
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pleura
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a thin lining in your chest – it has two layers. The visceral pleura lines the lung and the parietal pleura lines the chest wall
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pleural aspiration and biopsy
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a test where a needle is inserted into the space between the layers of your chest lining to draining the fluid using a syringe. A special needle can be used, known as an Abraham’s needle, which can take a small biopsy.
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pleural drain
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this is when a needle is inserted into the space between the layers of the lining in your chest to drain off the fluid that has collected.
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pleural effusion
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a build-up of fluid between the layers of the lining in your chest
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pleural fluid
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The fluid between the layers of the lining in your chest
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pleural mesothelioma
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mesothelioma affecting the pleura (the lining in your chest)
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pleural space or pleural cavity
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The space between the layers of the lining in your chest
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staging
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When the doctors work out how advanced your mesothelioma is (what ‘stage’ the tumour is at)
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talc pleurodesis
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An operation to stop fluid collecting in the pleural space. Talc or another chemical is put into the pleural space once all the fluid has been drained off. This causes the two surfaces of the chest lining to become inflamed, then stick together. This leaves no space for the fluid to build up in.
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thoracoscopy
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A test where an endoscope is inserted into your chest. This is also known as VATS (video assisted thorascopic surgery).
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tru-cut biopsy
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This is when a normal needle or a special biopsy needle is inserted directly into the tumour tissue to suck out some tumour cells, or take a small biopsy. The needle is positioned with the help of either CT scanning or ultra-sound, and you have a local anaesthetic. This is the same as ‘fine needle aspiration’.
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tumour
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a tumour is a growth of tissue that forms an abnormal mass. Tumours generally have no useful function and grow at the expense of healthy tissue.
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ultrasound
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a sort of scan. Ultrasound uses high-frequency sound waves to create images of organs and systems within the body.
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vats – video assisted thorascopic surgery
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a test where an endoscope is inserted into your chest. This is also known as thoracoscopy.
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- Asbestos support group - Barrow- C/o Hospice of St Mary of Furness Ford Park, Ulverston Cumbria LA12 7JP t: 01229 580305 ext.32
- Asbestos support group - Bradford - Unison Offices 2nd Floor, Auburn House Upper Piccadilly, Bradford BD1 3NU t: 01274 393949
- Asbestos support group - Cheshire - 3 Fryer Street Runcorn, Cheshire WA7 1ND 01928 576641
- Asbestos support group - Derbyshire - Trade Union Safety Team 70 Saltergate Chesterfield S40 1JR t: 01246 231441
- Asbestos support group - Hampshire - t: 07940 328637 (Lynne) or t: 07792 543426 (Diane)
- Asbestos support group - Gtr Manchester - Windrush Millennium Centre, Unit 2.5 70 Alexandra Road, Moss Side Manchester, M16 7WD t: 0161 636 7555
- Asbestos support group - Merseyside - Suite 32, Second Floor, Oriel Chambers 14 Water Street, Liverpool L2 8TD t: 0151 236 1895
- Asbestos support group - North East - Trade Union Centre, 119/121 Marton Road Middlesborough, Cleveland TS1 2DU t: 01642 240044
- Asbestos support group - Sheffield And Rotherham :- 311 Aizlewoods Mill Nursery Street Sheffield S3 8GG t: 0114 2823 212
- British Lung Foundation - helpline 08458 50 50 20
- The June Hancock Mesothelioma Research Fund- t: 0114 274 4420
- Mesothelioma UK- t: 0800 169 2409
- MacMillan cancer relief - t: 0808 8082020
- Department for Work and Pensions- t: 0800 88 22 00
- Department for Work and Pensions(for IIDB) - Call JobCentre Plus (number in the phone book)
- Law Society(for a list of specialist solicitors), England and Wales - t: 0870 606 2555
- Law Society, N Ireland - t: 028 90 231614
- Law Society, Scotland - t: 0131 226 7411
- The Mick Knighton Mesothelioma Research Fund - t: 0191 263 7386
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Page last medically reviewed: January '06
