Often the route to being diagnosed with mesothelioma begins with the GP. Many people will seek advice from their doctor when they develop symptoms such as shortness of breath. 

If you are worried that you may have mesothelioma and are unsure how what will happen next the following information will help you understand some of the tests used to diagnose mesothelioma.   

The GP will ask questions about your symptoms and what has changed from how you are normally.  They will ask about any risk factors which may increase the likelihood of you having a chest condition, such as smoking. You should also mention any asbestos exposure you are aware of.  The GP will listen to your chest and will ask for a chest x-ray to be performed. 

This is a quick painless test that will give a black and white picture of your lungs, heart and diaphragm.  It may show that there is fluid gathering on one side of the chest within the lining of the lung, this is called a pleural effusion.  Even if the x-ray is normal the GP will likely refer you to a specialist at the hospital.  This will usually be to the respiratory (chest) team.  If the x-ray shows an abnormality a CT scan, which is a more detailed test may be automatically requested for you.  

This is a very detailed scan that will look at your body in more details, often the scan will include your chest, abdomen and pelvis, sometimes your head will also be included.  Before the scan you will be given an injection of contrast into your vein this helps to show up structures like blood vessels.  You will lie on a couch and your body will pass through a large doughnut-shaped machine which is capturing images of you as it passes through.   

You may want to bring a relative or friend along to your appointments for support, sometimes it can be difficult to remember all of the information that is discussed, especially if you are feeling anxious.  On your first visit to the hospital, you will usually be seen by a doctor or a specialist nurse, in many cases, a CT scan will have been performed before your first appointment.  Some hospitals have a rapid access clinic whereby you have a scan and your first appointment on the same day.  At the appointment, the doctor or nurse will ask you about your symptoms and your medical history.  You should bring a list of your current medications with you.  They will also ask about any asbestos exposure you may have had and about your occupation to determine if you have been at risk of exposure.  If they already have the result of the CT scan they will guide you with any further tests needed.   

In order to confirm the diagnosis the doctor will want to get a biopsy sample and/or a sample of fluid. This can be done in a number of ways.  

If there is a collection of fluid the doctor may want to take a sample for analysis and this may be done on the first appointment.  It is sometimes called a pleural tap.  The doctor will usually use a small ultrasound scanner to mark the area to drain before inserting some local anaesthetic.  Once this has numbed the area the doctor will insert the needle and draw off some fluid.  If there is a lot of fluid and it is causing you to be very breathless the doctor may take off a larger amount to relieve your symptoms.  

Sometimes the doctor can use a camera to look inside of the chest and take biopsies of the lining of your lung. You will have to lie on your side and the doctor will make a small cut to insert the camera. At the same time the doctor can drain off all of the fluid and some sterile talc may be inserted into the chest to try and prevent the fluid from gathering again. Alternatively the doctor may insert a catheter which stays in to help manage the fluid collection, the is called an indwelling pleural catheter (IPC). Thoracoscopy procedures are often done with local anaesthetic and sedation to make you feel relaxed. Sometimes thoracoscopy is performed under general anaesthetic, your doctor will explain which test is best for you and why.

This involves taking a biopsy from the inside lining of the chest by inserting a needle through the skin and chest wall.  This procedure is often conducted by a radiologist.  A CT scan or an ultrasound scan will be used to pinpoint the area to be biopsied.  This is done under local anaesthetic.   

When the tests have been completed your doctor will discuss your results at a specialist cancer meeting, this is often the lung cancer multidisciplinary meeting although some centres may have a specific mesothelioma MDT meeting.  These meetings bring together the specialist team involved in the care of patients with lung cancer/mesothelioma.  The team usually comprises: 

• Chest Physician – this is likely the doctor coordinating your tests 
• Specialist Nurse – a nurse who specialises in lung cancer and/or mesothelioma 
• Oncologist – a doctor who gives treatments for cancer 
• Radiologist – a doctor who specialises in x-rays and scans 
• Pathologist – a doctor who specialises in analysing biopsy samples in the laboratory 
• Surgeon – specialising in chest surgery  
• Palliative Care – a doctor or a nurse who specialise in the management of symptoms  

This team will discuss your scans and test results and if it confirms you have mesothelioma they will recommend a treatment plan for you.  This will usually be discussed with you in clinic soon after the MDT meeting has taken place.  You will normally meet the specialist nurse on your first visit to the hospital or when you are told your diagnosis.  You will be given a number for the specialist nurse so that you can contact them with any questions or concerns outside of your appointments.   

How often you are seen at the hospital will depend upon your individual treatment plan, your specialist team will be able to give you further information and guidance with this.  

If you have any questions about this information and would like to speak to a mesothelioma clinical nurse specialist please call our Freephone Support Line on 0800 169 2409 or email info@mesothelioma.uk.com.