If your doctor thinks you might have mesothelioma, you will be referred to a special clinic at the hospital called the rapid access clinic or urgent cancer clinic.
These services are set up to confirm if you have mesothelioma or not, and provide specialist advice and treatment.
Your hospital should aim to meet the following targets:
- you should see a specialist at the hospital within two weeks of referral (if you live in England or Wales);
- you should start your treatment within 31 days of receiving a diagnosis of mesothelioma and agreeing to a course of treatment, and
- you should be treated within 62 days of referral.
In some cases, it can take longer than usual to diagnose or treat your condition. Waiting for tests and results can be very frustrating and upsetting. Remember that it is much more important to get the right treatment than getting treatment quickly.
Steps for mesothelioma diagnosis:
My first appointment with the specialist
At your first appointment you will usually see a specialist lung doctor. The doctor will ask you lots of questions about your symptoms as well as about your medical history. He or she might also examine you. You can help by bringing an accurate list of any medicines you are taking to the appointment.
The doctor will explain the results of any tests you have had so far and advise on which further tests are needed. Most clinics offer patients a CT scan before their first appointment with a specialist. If you have not already had this, then one will be organised for you.
Other tests might include blood samples, breathing tests, a pleural aspiration, a thoracoscopy or a percutaneous biopsy.
Usually, you will be offered the opportunity to meet a specialist cancer nurse. This nurse is there to help to arrange your tests and provide you with further information. They will also give you their contact details so you can get in touch if you have any questions or worries.
CT scans
After a chest X-ray, a CT scan is the next key step to diagnose mesothelioma. A CT scan is carried out using a special X-ray machine. It produces an image of a cross-section, or slice, of your body. You will pass through a doughnut-shaped scanner while lying on a flat bed.
Unlike an MRI scan, where youre placed inside a tunnel, you shouldnt feel claustrophobic. You will be given an injection in your hand and the machine will take pictures of your chest and stomach area. The injection contains iodine, so make sure you tell the hospital staff if you are allergic. The scan only takes a few minutes, but provides a much more detailed picture of your chest and other organs that the cancer can spread to.
The CT scan gives your doctor much more reliable information about whether you have mesothelioma or not, and how advanced it is. But it is not always conclusive. For example, it might show that there is a pleural effusion but there are many causes of this. Usually further tests will be needed to confirm whether or not mesothelioma is the cause.
The multidisciplinary team
The doctor and nurse you see at your first appointment are part of a team of health care professionals who specialise in diagnosing and treating lung cancer and mesothelioma. This is called a multidisciplinary team (MDT). It also includes X-ray specialists called radiologists, cancer specialists called oncologists, and surgeons, who meet every week to discuss your test results and plan your care.
Since mesothelioma is not as common as other cancers, individual MDTs might not have a lot of experience in diagnosing and treating it, so some hospitals have come together to develop mesothelioma specialist multidisciplinary teams (SMDTs). There is some evidence that mesothelioma SMDTs offer a wider range of treatment options and access to clinical trials. You might wish to ask whether there is a mesothelioma SMDT in your area that can be involved in your care.
Further tests
If you are diagnosed with mesothelioma, the team looking after you will want to answer the following questions:
- What is it? Is this definitely mesothelioma and if so, what type is it?
- Where is it? Is the tumour only in your chest or has it spread? This is known as the stage.
- What do we do about it? When you have the above information, what are your treatment options?
To confirm that you have mesothelioma, and which type you have, your doctor might need to take a sample of fluid or tissue for testing. This is called a biopsy. There are several different types of biopsy but the most common techniques are a pleural aspiration, thoracoscopy, or percutaneous biopsy.
-
Pleural aspiration or tap
The doctor inserts a thin needle through your skin and into the pleural space around your lungs. They will usually use an ultrasound scan to identify the best area to insert the needle. You might be offered a local anaesthetic, but it is not a very painful procedure so you dont have to have it.The doctor will take a sample of the fluid using a syringe. This sample goes to the laboratory for testing. Sometimes your doctor might drain a lot of the fluid to relieve symptoms if it is making you feel very out of breath.
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Percutaneous biopsy
This means taking a sample of tissue from the lining of your lung by passing a thin needle through the wall of your chest. The sample is sent it to the laboratory for examination under the microscope. The doctor might use ultrasound or CT to see the best way in for the needle. -
Thoracoscopy
This is becoming the test that doctors prefer to use for the best results if you have a pleural effusion. A doctor uses an instrument called a thoracoscope to look into the pleural space around your lungs.The test is usually carried out using a local anaesthetic to numb the area and you will be sedated to relax you. Occasionally it has to be done under general anaesthetic.
A small cut is made in your chest to insert the thoracoscope. It also allows the doctor to remove fluid or take a sample of tissue. At the same time sterile talc might be puffed into the chest to try to prevent fluid from building up again in the future.
The way that this test is carried out varies between hospitals, but it is likely that youll be admitted and stay in the hospital for one or two nights.
The results of your biopsy should be available after five to seven days. Occasionally the reading of the biopsy is not straightforward and it might need to be sent away for a second opinion, which means that it will take longer.
What stage is your cancer at?
There are three factors used to work out where the cancer is in your body. This is called finding out what stage the cancer is at:
- T-stage how large is the primary Tumour (where the cancer started) and what parts of your chest are affected?
- N-stage has the cancer spread to any lymph glands (also called Nodes)?
- M-stage has the cancer spread (or Metastasised) to other areas in your body?
Once the doctor knows these three factors, an overall stage will be decided, to show how large the cancer is and whether it has spread further around the body. Generally, mesothelioma is divided into four stages. Stage 1 is the earliest stage and stage 4 is the most advanced stage:
Stage 1a: mesothelioma affects the outer layer of the pleura around your chest wall on one side of your chest only. It might have grown into the pleural tissue covering your diaphragm.
Stage 1b: mesothelioma has started to spread to the inner pleural layer (closest to the lungs). But it is only on one side of your chest and has not spread into your lung tissue or diaphragm.
Stage 2: mesothelioma has spread to both layers of the pleura on one side of your body and has enlarged to form a tumour mass on the pleural tissue around your lungs, or has started to spread into your diaphragm muscle or your lung tissue.
Stage 3: mesothelioma has spread to your chest wall or the covering of your heart, also called the pericardium, but it is still potentially possible to remove it with surgery; or it has spread to the lymph nodes on the same side of your chest.
Stage 4: mesothelioma cannot be removed by surgery because:
- it has spread to different parts of your chest wall; or
- it has grown through your diaphragm and into the pleura on the other side of your body; or into your chest organs, or through to the inner layer of your pericardium; or into your peritoneum. This is a membrane like the pleura that covers your organs inside your abdomen; or
- it has spread to the lymph nodes on the other side of your chest, or above the collarbone; or
- it has spread to other parts of your body.
Getting my results
Next, you will see your specialist doctor to discuss your test results and the treatment options that have been recommended. You will be offered the type of treatment that seems best for you, but you might want to talk to your family or a doctor you know well before you make a decision about treatment. The doctors and nurses will respect your views at every step.
You will probably want to ask lots of questions, such as:
- Will I be cured?
- What are the side-effects of treatment?
- Should I stop working?
- Can I still go on holiday?
- Am I going to die?
No-one will have all the answers, but the specialist doctor will answer your questions as honestly as possible. Your specialist nurse can give you additional support and extra information. If you have more questions, or just need to talk, you can call the BLF Helpline.
Outlook for mesothelioma - what should I expect?
Although there have been advances in the treatment of mesothelioma, it is still usually regarded as a terminal condition.
Sadly, only around eight per cent of people diagnosed with mesothelioma will survive for five years or more. The condition is often diagnosed at an advanced stage, and people with mesothelioma are often elderly and have other health problems.
Treatments are usually aimed at easing your symptoms and improving your quality of life, as well as to try to prolong your life. Your specialist doctor or nurse can talk to you about your outlook in more detail, but it is not always possible to be totally accurate.
Next steps:
Need some help?
The specialist nurses and advisers on our helpline are dedicated to answering your questions.
Whether its about finding equipment, coping with symptoms or if you just need a chat, they are here for you. Ringing the helpline never costs more than a local call and is usually free, even from a mobile.
The BLF values feedback on all of its information. To let us know your views, please email publications@blf.org.uk.
Last medically reviewed: November 2014. Due for review: November 2017.
To order a printed copy of this information, please call our helpline on 03000 030 555 or visit our online shop. For the latest references please email publications@blf.org.uk.
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