PO Box 26 Enfield Middlesex EN1 2NT Tel:Fax 020 8360 6413 Mesothelioma is caused by all types of asbestos blue, brown and white.

What is Mesothelioma?

Mesothelioma - also known as 'diffuse' or 'malignant' mesothelioma - is a relatively rare form of cancer which affects the membranous lining of the chest (the pleura) and less commonly, the lining of the abdomen (the peritoneum) and of the heart (the pericardium).

The disease can take 10-50 years (or even longer) to develop and is usually associated with asbestos exposure.

A  small number of people develop mesothelioma without known exposure; this may be because it can be difficult to trace the exposure  because of the huge time lapse before the disease develops.  The period of exposure to asbestos may have been quite short but usually heavy and all forms, blue, brown and white, can cause mesothelioma.

How is it diagnosed ?

Early diagnosis is difficult and, in most cases, the first obvious sign of something being wrong is when an 'effusion' occurs.  This is an accumulation of fluid which gathers in the pleural space around the lung (or peritoneal space in the abdomen).  This often causes breathlessness and the doctor can draw or drain the fluid off to relieve this symptom.

On chest x-rays the signs are often not very definite and may possibly only show a slight thickening of the pleura.  It may be necessary for several tests and biopsies to confirm the diagnosis - and this may take a few weeks.

Mesothelioma has, so far, resisted most forms of treatment including chemotherapy and radiotherapy - however, research is continuing throughout the world.  Measures to reduce exposure to asbestos will hopefully prevent future cases.

At present, the most helpful treatment is that which deals with symptoms ... for example, removal of pleural fluid to relieve breathlessness and good pain control if this is a problem.

Sometimes a swelling forms at the site of any surgical wound caused when investigations are being carried out to identify the disease.  This is not necessarily a sign that the disease is progressing more rapidly.  However, bring it to the attention of your specialist.  It is now becoming more common for radiotherapy treatment to be used to try to prevent this symptom occurring.

Will it spread to other parts of my body?

Spread to distant parts of the body can occur but is unlikely to be a problem.  Mesothelioma spreads slowly outwards from its starting place, along the lining of the chest, or abdomen wall and problems are usually confined to that locality or areas in close contact.

Will I have any pain ?   If so, can it be controlled?

Because of the nature and position of the tumour in the chest wall some people with mesothelioma have aches and pains even before the diagnosis, whilst others have few problems with pain.  It is important to realise that, if you are one of the unfortunate ones with early pain, this is not necessarily related to the extent of your disease - but more to do with where the mesothelioma is situated.  The pleural surfaces, which are normally smooth, may become roughened and prevented from sliding across each other, with consequent breathing problems and pain.

To maintain the quality of your life it is very important to be sure that you obtain adequate help with pain control if this is a problem for you.  It is very rare for pain to be out of control and drugs are readily available which need to be given at the correct level and combination for the individual.  You can ask for specialist help if you are having difficulties with pain.  Hospice and Macmillan Nurses are available in most areas and your GP or hospital Consultant can request them for you.

There are helpful techniques which can be used alongside medication e.g. relaxation.  A useful booklet, 'Feeling Better, Controlling Pain & Other Symptoms' is available from BACUP

How can I help myself to stay as well as possible ?

There is quite a lot you can do .......

You can help yourself by maintaining your general health as much as possible i.e. a good balanced diet, preferably high calorie and rich in protein.  If your appetite is not good, it may be beneficial to supplement your diet with specially balanced drinks which can be prescribed by your GP - or ask to see your hospital or community dietician for advice.

Exercise is essential to maintain good muscle tone.  If your energy is low you can still do passive exercises of legs and ankles whilst sitting down.

If you are lacking in energy or get breathless on exertion, save your energy for things you really want to do; make life as easy and convenient as you possibly can and don't be too proud to accept help to achieve this (other people like to feel needed and useful).

Complimentary therapies such as relaxation, massage and aromatherapy can be helpful in dealing with stress and anxiety.

It is wise to get medical advice if you start with a cold or chest infection and to avoid very close contact with people who have colds and 'flu' etc.

What help is available if I need it?

Support is available from your GP and Consultant.  Nursing help is also available and your local District Nursing Sister should probably be your first contact - preferably when you are first diagnosed.  She can support you and, if necessary, arrange any nursing help or equipment you may need.

Domestic help and any adaptations to your house e.g. bathing aids are provided through your local Social Services office.  They can also help with day-to-day living problems e.g. washing, dressing and cooking.  These services are 'means tested' so it is important to claim benefits which will help cover any of these costs!

Who can I talk to?

Many people get emotional support from those friends and relatives closest to them.  This, however, may not be enough and they also may feel the need for support.  Professional help and support is available in many areas and your GP or District Nurse may be the best people to advise you about what is available locally -or you could phone one of the advice lines listed on our 'useful contacts' page.

Children and young people within your family need to know what is happening too.  Don't feel they need to be protected and be as open and honest with them as their age allows.  Their fear of what they imagine is often worse than reality.

Please remember'Coping' does not mean the same as managing alone and people often want to help, even if it's just by listening to your worries or doing errands for you.   Haven't you ever felt good because you helped someone when they needed it?   Allow those around you to feel good too ......