Patient and Carers

What is mesothelioma?

Mesothelioma is a cancer which usually affects the lining (or pleura) of the lung. Occasionally it can arise from the lining of gut (peritoneal mesothelioma). The pleural is normally only one cell thick and there are two layers of pleural, one that covers each lung and one that covers the chest cavity. When mesothelioma develops in the lining of the lung the very delicate linings thickens.

Pleural effusions [fluid in the cavity between the linings of the chest wall and the lung] push the lung out of the way and cause a patient to have symptoms such as breathlessness or cough. This fluid can be easily managed by a number of different techniques. The majority of patients will have a pleural effusion at some point in their disease process. To confirm a diagnosis most patients will require a biopsy.

Unfortunately there is still no cure for Mesothelioma and treatments are often focused on maintaining a good quality of life for as long as possible.

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.

For more information about your type of Mesothelioma please speak to your lung cancer and Mesothelioma nurse specialist.

What symptoms might I experience?

The symptoms may include any of the following:
• Breathlessness or shortness of breath
• Chest wall discomfort that can feel heavy, dull or aching
• Cough
• Weight loss
• Loss of appetite
• Sweating or fever
• Fatigue

Peritoneal Mesothelioma
• Abdominal pain and swelling
• Loss of appetite
• Feeling bloated or sick
• Change to your bowel habit
These symptoms can also be caused by other things unrelated to the cancer, always call your GP or lung cancer and mesothelioma nurse specialist if they persist.

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. Mesothelioma doesn’t usually develop until many years after exposure to asbestos and the average is between 15-60 years although the average is 30-40 years.

Asbestos is a natural mineral and acts as an insulator (to keep heat in and cold out).

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-checks for any abnormalities in the lungs
  • CT scan-takes cross sectional images of your chest, abdomen and pelvis
  • Pleural aspiration-if fluid as built up between the lining of the lung we may be able to take a small sample to help us find out what’s causing the fluid.
  • Biopsy- a biopsy is usually needed to help diagnose mesothelioma and can be carried out either using CT or ultrasound guided biopsy
  • Thoracoscopy-this allows the Drs to look closely at the pleura and take biopsies if necessary
  • Surgical biopsy- sometimes it is necessary to ask a surgeon to take biopsies to confirm the diagnosis
  • 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 and mesothelioma nurse specialist.

How will the diagnosis be made?

The diagnosis is made by combining the medical history, scans 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. At this meeting we will review the type of mesothelioma, whether there are any nodes involved or whether there is any spread of the cancer.

How can it be treated?

Once the Multidisciplinary Team Meeting has reviewed your scans and biopsies 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.

Treatments may include chemotherapy, radiotherapy, immunotherapy or surgery. Please speak to your team if you would like to discuss any of these treatments.

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

you will be seen by the oncology team 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.

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 both locally and nationally please speak to your specialist team to see if any of them would be suitable for you.

See the news section on this website for the up to date trials.

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 there is a sliding scale range.

2. Industrial Injury Disablement Benefit is available for those who were exposed to asbestos dust when employed.

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 on the balance of probability that you were exposed during your working career, compensation may be possible from a previous employer.

You will have the opportunity to go through what you may be entitled to and it is often the case that we advise you to seek legal advice form a solicitor who specialises in asbestos related claims. This can be a daunting experience, talk this through with your nurse specialist who can help you.

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 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 your 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 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.

Referral to the coroner.

Mesothelioma is classified as an occupational disease and as such unfortunately when a patient sadly dies the coroner must be informed who will carry out an inquest.
The coroner will decide if a post mortem is required to find out if the death is due to mesothelioma or some other cause.

In many situations, a post mortem isn’t needed if there is enough evidence to confirm the diagnosis.

It can be a very anxious and distressing time when you have to deal with other issues as well as the death of a relative. You may wish to get support your Nurse Specialist at this time.

Support for you.

If you or someone close to you has been affected by an asbestos related disease such as mesothelioma, there is a group within Bristol and South West region which aims to provide support, information and advice.

How you can help AMF