Avon Mesothelioma Foundation

Patient and Carers

What is mesothelioma?

Mesothelioma is a cancer of the lining [or pleura] of the lung. It is a thin membrane which is like a sausage skin which surrounds the chest .When mesothelioma develops in the lining of the lung the very delicate linings thicken and can cause pressure on the lung. There are two thin layers of the pleura and sometimes fluid may build up between these two layers.

Mesothelioma can also develop in the abdomen known as the peritoneum, this is called peritoneal mesothelioma.It also has two layers and can cause thickening of the lining surrounding the abdominal organs and fluid can also build up here which is called Ascites

For more information please speak to your lung cancer nurse specialist or read Macmillan Understanding mesothelioma booklet

What symptoms might I have?

the symptoms may include any of the following:

  • Breathlessness
  • Chest wall discomfort
  • Cough
  • Weight loss
  • Sweating or fever
  • Abdominal pain and swelling [peritoneal mesothelioma]

These symptoms can also be caused by other things unrelated to the cancer, always call your GP or lung cancer nurse specialist if they don’t go away


How long has it been there?

Asbestos is the most common cause of mesothelioma,and was commonly used in UK industries until it was banned in the 1999. Generally, mesothelioma doesn’t usually develop until many years after exposure to asbestos and the average is between 30-40 years

Asbestos fibres are very thin and have the ability to make their way into the smallest of airways in the lung. The asbestos fibres travel through the lung tissue and settle in the lining of the lung, over many years they can cause mesothelioma

What investigations might I expect?

These may include:

  • a chest X-ray
  • CT scan
  • Pleural aspiration
  • Thoracoscopy
  • CT guided biopsy
  • A detailed medical history
  • Physical examination
  • Blood tests

Waiting for test results can take several days to be ready and this can be an anxious time for you and your family, if you have any questions please contact your lung cancer nurse specialist

Will I have to come into hospital?

Most investigations can be carried out in outpatients However there are some when you will be required to stay in for a few days . Sometimes when fluid has built up between the two linings of the lung [called a pleural effusion] .The fluid can press on the lung making it difficult for the lung to expand and can cause breathless or chest discomfort

It can be treated by putting a small tube between the two linings of the lung and draining off the fluid. Once the fluid is fully drained it may be possible to stick the two linings of the lung together, called a pleurodesis using an agent such as sterile talcum powder or a chemical powder to cause an irritation so the linings stick together. The aim is to reduce the chance of the fluid reaccumulating.

How will the diagnosis be made?

The diagnosis is made by combining the medical history , CT scan and a biopsy. Sometimes Mesothelioma can be tricky to diagnose and occasionally more than one biopsy may be necessary.

Once all the results are available they will be reviewed by a multi disciplinary team of professionals to review all of the test results and explore what treatment options or clinical trials may be available

How can it be treated?

Once The Multidisciplinary Team Meeting diagnosis has been made and discussed at a multidisciplinary meeting the most appropriate treatment can be planned and this will vary between patients depending on where the mesothelioma is in the body, your fitness and any other medical conditions that you may have.

Currently, sadly there is no cure for mesothelioma and therefore the benefits of treatment must outweigh the side effects. Controlling the symptoms is the main aim of treatment. The treatments may include chemotherapy, radiotherapy and rarely surgery. for more information about specific treatment please refer to the Macmillan Understanding Mesothelioma Booklet. You may also be invited to join a clinical trial

Please ask if there are any clinical trials available that may be suitable.

Are there any trials I can help with?

When the diagnosis is discussed at the Multidiscliplinary Team it is an opportunity to discuss if there would be any clinical trials that you would be eligible for. The Avon Mesothelioma Foundation is currently leading a number of trials nationally please speak to your specialist team to see if any of them would be suitable for you.

What happens to me during treatment?

If you are offered treatment you will be seen on a regular basis through your treatment sessions. For chemotherapy [anti cancer treatment] you will Initially be seen by the oncologist [cancer doctor] who will assess your fitness and make sure you understand how to manage the side effects you may experience, you will be asked to sign a consent form and your weight and height will be taken and some routine bloods to check especially for your kidney function. You may be given a prescription for some drugs to minimise the side effects if certain chemotherapy agents are used especially Pemetrexed .

You will be seen by the oncologist between each cycle of treatment for a further assessment and preparation for the next course ,bloods and a chest x ray will also be taken.It is important that you understand what to do and where to go if you are not feeling well during your treatment, it is always useful to keep by the phone the emergency number for the oncology ward and that your family know who to contact if you are unwell.

If you are having radiotherapy which is X ray treatment the benefits and side effects will be explained to you.

Radiotherapy can be given for different reasons but is especially helpful for pain, a troublesome cough or it can be given as part of a clinical trial to the chest wall at the place where the biopsy site is. Avon Mesothelioma is running a national trial to look at the benefits of giving radiotherapy for this. Please speak to your cancer team to see if you would be eligible for this.

Can I be cured?

Sadly at present it is not possible to cure mesothelioma.,

More research is needed to be done in this area and as more people are being diagnosed each year with the disease we are learning all the time .Unfortunately ,when mesothelioma is diagnosed it has already spread beyond the point when it is possible to completely remove it and therefore the treatment is aimed at controlling symptoms and slowing the progression down

Can I get compensation?

If your mesothelioma could have been caused through exposure to asbestos you may be able to claim compensation.

The main state benefits for those with mesothelioma are:
1. A lump sum payment. This is available under two schemes that operate alongside each other:

●  The Pneumoconiosis (Workers’ Compensation) Act 1979 for those who were occupationally exposed to asbestos dust;

●  The 2008 Diffuse Mesothelioma Scheme if there is no evidence of occupational exposure to asbestos dust.

Payments under both scheme are age-related and the sliding scale range from April 2013 is a maximum of £83,330 for people under 37 and £12,945 for those aged 77 or over.

2. Industrial Injury Disablement Benefit is available for those who were exposed to asbestos dust when employed. The current amount payable for those with mesothelioma is £161.60 per week.

If you were exposed during your time in the armed forces there may be claim via the war pension’s agency

If it can be proved that you were exposed during your working career, compensation may be possible from your employer.

This can be a daunting experience, talk this through with your lung cancer nurse specialist who can help you .Please refer to the Macmillan mesothelioma booklet for further written information and advise

You may also be entitled to either the Attendance Allowance [if you are over 65 or the Personal Independence Payment [if you are under 65] talk to your Lung Cancer Nurse Specialist about any financial worries you may have.

How will it affect my family?

A diagnosis affects everyone including families and friends. People react in very different ways and the lung cancer nurse specialist is here to support everyone. Some people find it difficult to talk about their feeling ,once a diagnosis has been made it is important that you discuss any worries or concerns that you may have and share them with your family

What support is available for me and my family at home?

The most important person to you at home is your GP and is a vital to supporting you and your family. Your GP can help control any symptoms you may be experiencing. Keep in contact with GP practice Mesothelioma and notifiable disease.

There are also District Nurses and Community matrons available and also teams who provide specialist palliative care support in the community from your local hospice. Talk through with your lung cancer nurse specialist which of the services you may benefit from.

Mesothelioma is a ‘notifiable diease’,what does that mean?

When a person dies form mesothelioma the death must be reported to the coroner. They decide whether a post mortem examination is required. This can be a very distressing and difficult time and your family may be to get support from the Lung Cancer Nurse Specialist at this time.

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