Understanding Malignant Pleural Mesothelioma: A Patient's Guide
 

This information sheet is designed to help you understand more about malignant pleural mesothelioma, a rare cancer that affects the lining of the lungs. Learning about your condition is an important step in managing your health.
 

What is Malignant Pleural Mesothelioma?
 

Malignant pleural mesothelioma (MPM) is a type of cancer that develops in the pleura.
The pleura is a thin membrane that lines the outside of your lungs and the inside of your chest wall.
It has two layers: one that covers the lungs (visceral pleura) and another that lines the chest cavity (parietal pleura).
Between these layers is a small space (pleural space) that normally contains a small amount of fluid, allowing your lungs to move smoothly as you breathe.

In MPM, cells in the pleura begin to grow and divide uncontrollably, forming tumours. "Malignant" means it is cancerous and can spread to other parts of the body.

Mesothelioma can also occur in the lining of the abdomen (peritoneal mesothelioma) or, very rarely, around the heart (pericardial mesothelioma) or testes (tunica vaginalis mesothelioma), but pleural mesothelioma is the most common type.
 

What Causes Malignant Pleural Mesothelioma?
 

The main cause of malignant pleural mesothelioma is exposure to asbestos. Asbestos is a naturally occurring mineral that was widely used in the past in construction, shipbuilding, and other industries due to its heat-resistant and insulating properties.

When asbestos materials are disturbed, tiny fibres can be released into the air and inhaled. These fibres can lodge in the pleura and, over a very long period (often decades), can cause inflammation and genetic changes that lead to cancer.
 

• Occupational Exposure: Many people with mesothelioma were exposed to asbestos at work.

• Secondary Exposure: Family members of asbestos workers could also be exposed through fibres brought home on clothing.

• Environmental Exposure: Living near asbestos mines or factories could also pose a risk.

Not everyone exposed to asbestos develops mesothelioma, and other factors may play a role, but asbestos exposure is the most significant risk factor. In rare cases, mesothelioma can occur in people with no known asbestos exposure.
 

What are the Symptoms?
 

Symptoms of pleural mesothelioma can take many years (20 to 50 years or more) to develop after asbestos exposure. They can also be similar to other, less serious lung conditions, which can sometimes delay diagnosis.

Common symptoms include:

• Shortness of breath (dyspnoea): This is often caused by a build-up of fluid in the pleural space (pleural effusion) or thickening of the pleura, which restricts lung expansion.

• Chest pain: Often described as a dull ache or tightness, usually on one side of the chest, which may worsen with deep breathing or coughing.

• Persistent cough: Usually dry.

• Unexplained weight loss

• Fatigue (extreme tiredness)

• Fever and night sweats

• Hoarseness or changes in voice

• Difficulty swallowing (dysphagia)

• Lumps or swelling under the skin on the chest

If you have these symptoms, especially if you have a history of asbestos exposure, it's important to see your doctor.
 

How is Malignant Pleural Mesothelioma Diagnosed?
 

Diagnosing mesothelioma usually involves several steps:
 

1. Medical History and Physical Exam: Your doctor will ask about your symptoms, medical history, and any potential asbestos exposure. They will also perform a physical examination.
    

2. Imaging Tests:

   • Chest X-ray: Can show abnormalities like pleural thickening or fluid.

   • CT (Computed Tomography) Scan: Provides more detailed images of the chest and can show the extent of the tumour.

   • PET (Positron Emission Tomography) Scan: Can help see if the cancer has spread to lymph nodes or other parts of the body.

   • MRI (Magnetic Resonance Imaging) Scan: May be used in some cases to get more detailed images of soft tissues.
      

3. Fluid or Tissue Biopsy: This is the most important step for confirming a diagnosis.

   • Thoracentesis (Pleural Tap): If there is fluid around the lung, a needle is inserted into the chest to remove a sample of fluid for testing (cytology). Sometimes this is enough for diagnosis, but often a tissue biopsy is needed.

   • Needle Biopsy: A needle is guided (often using CT or ultrasound) into the abnormal area of the pleura to take a small tissue sample.

   • Thoracoscopy (VATS - Video-Assisted Thoracoscopic Surgery): This is often the preferred method for biopsy. A surgeon makes small incisions in the chest and inserts a thin tube with a camera (thoracoscope) to look at the pleura and take tissue samples. This procedure is done under general anaesthesia.

   • Open Biopsy (Thoracotomy): Rarely needed for diagnosis, this involves a larger incision to access the pleura.
      

4. Pathology Tests: The biopsy samples are examined under a microscope by a pathologist to look for mesothelioma cells. Special stains (immunohistochemistry) are often used to confirm the diagnosis and determine the cell type (epithelioid, sarcomatoid, or biphasic/mixed), which can affect treatment and prognosis.
    

Staging of Mesothelioma
 

Once diagnosed, mesothelioma is staged to describe its extent – how large the tumour is and whether it has spread. Staging helps doctors plan treatment and predict prognosis. Several staging systems exist, but they generally consider:
 

• The size and location of the primary tumour.

• Whether it has spread to nearby lymph nodes.

• Whether it has spread to distant parts of the body (metastasis).

The most common cell type, epithelioid mesothelioma, generally has a better prognosis than sarcomatoid or biphasic (mixed) types.
 

How is Malignant Pleural Mesothelioma Treated?
 

Treatment for mesothelioma is complex and depends on the stage of the cancer, the cell type, the patient's overall health, and personal preferences. Often, a combination of treatments is used. The goals of treatment may be to try to cure the cancer (if found very early), to control its growth and spread, or to relieve symptoms and improve quality of life (palliative care).
 

Common treatment options include:
 

• Chemotherapy:

  • Uses anti-cancer drugs to kill cancer cells. It's often a primary treatment for mesothelioma, especially if it has spread or cannot be removed with surgery.

  • Commonly given intravenously (IV).

  • A combination of drugs (e.g., pemetrexed and cisplatin or carboplatin) is often used.
     

• Surgery:

  • May be an option for some patients with earlier-stage disease. The goal is to remove as much of the visible cancer as possible.

  • Pleurectomy/Decortication (P/D): Removes the lining of the chest (pleura) and any visible tumour on the lung surface. The lung itself is left in place.

  • Extrapleural Pneumonectomy (EPP): A more extensive operation that removes the affected lung, the pleura, part of the diaphragm (the muscle below the lungs), and the lining around the heart (pericardium). This is a major operation and is suitable for only a small number of patients.

  • Surgery is often part of a "multimodality treatment" approach, combined with chemotherapy and/or radiotherapy.
     

• Radiotherapy (Radiation Therapy):

  • Uses high-energy rays to kill cancer cells.

  • Can be used after surgery to try to kill any remaining cancer cells.

  • Can also be used to relieve symptoms like pain or pressure from a tumour (palliative radiotherapy).
     

• Immunotherapy:

  • Helps your own immune system fight cancer. Certain immunotherapy drugs (immune checkpoint inhibitors like nivolumab and ipilimumab) have been approved for treating mesothelioma, often as a first-line treatment or if chemotherapy is no longer working.
     

• Targeted Therapy:

  • These drugs target specific molecules involved in cancer growth. Research is ongoing to find effective targeted therapies for mesothelioma.
     

• Palliative Care / Symptom Control:

  • Focuses on relieving symptoms (like pain and shortness of breath) and improving quality of life at any stage of the illness, not just at the end of life.

  • May involve procedures like thoracentesis or pleurodesis (to prevent fluid build-up), pain medication, oxygen therapy, and other supportive measures.
     

• Clinical Trials:

  • Mesothelioma is a rare cancer, and research into new and better treatments is ongoing. Clinical trials test new drugs or treatment approaches. Ask your doctor if a clinical trial might be an option for you.
     

Questions to Ask Your Doctor
 

It's important to have open discussions with your healthcare team. Here are some questions you might want to ask:

• What type and stage of mesothelioma do I have?

• What is my prognosis (outlook)?

• What are my treatment options? What do you recommend and why?

• What are the goals of each treatment option?

• What are the potential benefits and risks/side effects of each treatment?

• How will treatment affect my daily life?

• Will I need to be in the hospital for treatment? For how long?

• Are there any clinical trials that I might be eligible for?

• What support services are available for me and my family (e.g., specialist nurses, counsellors, support groups)?

• Who should I contact if I have questions or problems during or after treatment?

• Are there any financial assistance programs or benefits I might be eligible for, especially relating to asbestos exposure?
   

Disclaimer: This information sheet is intended for general knowledge and informational purposes only, and does not constitute medical advice. It is essential to consult with your doctor or other qualified healthcare provider for any questions you may have regarding a medical condition or treatment options. Do not disregard professional medical advice or delay in seeking it because of something you have read in this document.

Understanding Compensation for Malignant Mesothelioma in the UK:
A Patient's Guide
 

This information sheet is designed to provide you with general information about compensation options if you have been diagnosed with malignant pleural mesothelioma in the UK. Being diagnosed with mesothelioma is devastating, and understanding your rights to compensation can be an important step.
 

Please note: Compensation law is complex. This information sheet is for general guidance only and is not a substitute for specialist legal advice.
 

Why is Compensation Available for Mesothelioma?
 

Malignant pleural mesothelioma is almost always caused by exposure to asbestos. Historically, many employers and organisations did not adequately protect people from asbestos exposure, despite knowing the risks. Compensation schemes and legal claims aim to provide financial support for individuals affected by mesothelioma due to this past negligence.
 

Compensation can help with:

• Loss of earnings (past and future)

• Care costs (e.g., help with personal care, household tasks)

• Medical expenses not covered by the NHS (e.g., private treatments, travel to appointments)

• Aids and adaptations to your home

• Pain, suffering, and loss of quality of life

• Financial security for your family
   

Types of Compensation Available in the UK
 

There are several avenues for seeking compensation if you have mesothelioma:
 

1. Industrial Injuries Disablement Benefit (IIDB):

   • This is a weekly benefit paid by the government if you became ill as a result of an accident or disease caused by work. Mesothelioma is a prescribed industrial disease.

   • You do not need to prove your employer was negligent to claim IIDB.

   • You can claim this even if your former employer no longer exists.
      

2. Pneumoconiosis etc. (Workers' Compensation) Act 1979 Payment:

   • If you are awarded IIDB for mesothelioma (and meet certain other conditions, such as not having received compensation from an employer for the disease), you may be eligible for a lump sum payment from the government under this Act.

   • Dependants can also claim under this scheme if the person with mesothelioma has died before being able to claim or receive a payment.
      

3. Diffuse Mesothelioma Payment Scheme (DMPS) - "The Mesothelioma Act 2014 Scheme":

   • This scheme provides lump sum payments to people with diffuse mesothelioma who are unable to trace their negligent employer or their employer's insurer (e.g., because the company no longer exists).

   • It's also for dependants of those who have died from mesothelioma under similar circumstances.

   • To be eligible, you usually cannot have received a civil compensation payment already for the disease.
      

4. Civil Compensation Claim (Suing for Damages):

   • This involves making a legal claim against the employer(s) responsible for your asbestos exposure, or their insurers.

   • To be successful, you (or your solicitor) will need to prove that:

     • You were exposed to asbestos due to their negligence (breach of duty of care).

     • This exposure caused your mesothelioma.

   • These claims are often pursued through specialist solicitors who work on a "no win, no fee" basis (Conditional Fee Agreement).

   • If the employer no longer exists but their insurer can be traced, a claim can still be made.
      

5. War Pensions Scheme:

   • If your asbestos exposure occurred during service in HM Armed Forces, you might be eligible for a payment under this scheme.
      

Who Can Claim?
 

• The person diagnosed with mesothelioma.

• Dependants: If the person with mesothelioma has sadly passed away, their dependants (e.g., spouse, civil partner, children) may be able to make a claim or continue an existing one. This can be for their own loss (loss of dependency) and sometimes for the suffering of the deceased.
   

Time Limits for Making a Claim
 

It is crucial to be aware of time limits (known as "limitation periods") for making a compensation claim.
 

• Civil Claims: Generally, a claim must be started within three years of the date of diagnosis of mesothelioma, or three years from the date you first became aware that your illness was linked to asbestos exposure (if later). If the person has died, the three years usually run from the date of death.

• Government Schemes: There are also time limits for applying to government schemes, which can vary.
   

It is vital to seek legal advice as soon as possible after diagnosis to avoid missing these deadlines.
 

How to Seek Advice and Make a Claim
 

1. Contact a Specialist Solicitor:
    

   • Look for a solicitor who specialises in asbestos-related disease claims. They will have the expertise to navigate this complex area of law.

   • Many charities and support groups can recommend specialist solicitors.

   • Most specialist solicitors offer a free initial consultation and work on a "no win, no fee" basis.

2. Gather Information (Your Solicitor Will Guide You):
    

   • Medical Information: Your diagnosis, details of your symptoms.

   • Work History: A detailed list of all your past employers, job roles, and dates of employment. Try to recall where and how you might have been exposed to asbestos.

   • Witnesses: If possible, names of former colleagues who might be able to confirm working conditions and asbestos exposure.

   • HMRC Employment History: Your solicitor can help you obtain this.
      

3. Contact Support Organisations:

   • Organisations like Mesothelioma UK, Macmillan Cancer Support, and various asbestos victim support groups can provide invaluable information, emotional support, and guidance on benefits and compensation.
      

What to Expect from a Solicitor
 

A specialist solicitor will:
 

• Explain the claims process clearly.

• Advise you on the best course of action.

• Investigate your work history and try to trace liable employers/insurers.

• Gather evidence, including medical reports and witness statements.

• Negotiate with the other side to try to reach a settlement.

• Represent you in court if necessary (though many mesothelioma claims are settled out of court).

• Handle your claim with sensitivity and understanding.
   

Important Considerations
 

• Benefits and Compensation: Receiving a lump sum compensation payment can sometimes affect your entitlement to certain means-tested state benefits. Your solicitor or a benefits advisor can provide advice on this.

• Making a Will: It is advisable to make or update your Will after a mesothelioma diagnosis.
   

This is a difficult time, and navigating compensation can feel overwhelming. Remember that specialist help is available. Taking the first step to seek advice can make a significant difference.
 

Disclaimer: This information sheet is intended for general guidance on compensation for malignant mesothelioma in the UK and does not constitute legal or financial advice. Laws and schemes can change. It is essential to consult with a qualified specialist solicitor and/or a benefits advisor for advice tailored to your specific circumstances. Do not disregard professional advice or delay in seeking it because of something you have read in this document.