About the disease
Is there any treatment which may help?
Mesothelioma has, so far, resisted most forms of treatment including chemotherapy and radiotherapy – however, research and clinical trials are taking place to try and identify treatment which might be of help. Measures now in place to reduce exposure to asbestos will prevent many future cases of mesothelioma.
At present, the most helpful treatment is that which deals with the symptoms – for example removal of fluid from the pleural space to relieve breathlessness and good pain control if this is a problem. A procedure called a ‘pleurodesis’ may be carried out in an attempt to stop the fluid re-accumulating in the pleural space.
It is possible for swellings to arise at any biopsy site or surgical wound which may have been caused during investigations and treatment. It is now becoming common for a short course of radiotherapy treatment to be given to that area to try and prevent this problem occurring.
Will it spread to other parts of my body?
Spread to distant parts of the body is unlikely to be a problem. Mesothelioma spreads slowly outwards from its starting place, along the lining of the chest, or abdominal wall, and problems are usually confined to that locality and 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, and a useful booklet, ‘Feeling Better, Controlling Pain and Other Symptoms’ is available from CancerBACKUP.
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 dietitian 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).
- Complementary 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 l 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 some 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 given in the Resources Section of this website. You may also have contact with a minister who could help.
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 much 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.