Symptoms of mesothelioma

Symptoms vary depending on whether the mesothelioma is in the pleura or peritoneum. They may include some of those listed in this section. Symptoms of pleural mesothelioma shortness of breath heavy sweating (especially at night) fever chest pain that feels heavy and dull or aching weight loss loss of appetite a cough that doesn’t go away, although this is unusual. A collection of fluid between the layers of the pleura (pleural effusion) may cause shortness of breath and chest pain. Symptoms of peritoneal mesothelioma
swelling in the tummy (abdomen) tummy pain loss of appetite weight loss feeling sick changes to your normal bowel pattern, such as constipation or diarrhoea. A collection of fluid in the abdomen (ascites), may cause swelling in the tummy, pain, sickness and loss of appetite. All of these symptoms can be caused by conditions other than mesothelioma or cancer. If you have symptoms, you should always get them checked by your doctor, particularly if they don’t go away after a couple of weeks.

Staging of mesothelioma

The stage of a cancer is a term used to describe its size and whether it has spread beyond the area of the body where it started. In general terms, most cancers are described as either stage 1, 2, 3 or 4. Stage 1 cancers are usually small in size and haven’t spread. They are often known as early stage cancers. In contrast, stage 4 cancers have usually spread deeply into surrounding tissues or organs and/or to distant parts of the body. They are known as advanced stage cancers. Stage 2 and 3 cancers are between stages 1 and 4. Knowing the stage of the cancer can sometimes help doctors decide on the best treatment. Staging systems are often complicated to understand. Find out more the detailed staging of mesothelioma. You can also ask your specialist to give you more information about the staging of your mesothelioma.

How mesothelioma is diagnosed

Usually, you begin by seeing your family doctor (GP) who will examine you and may arrange for you to have some blood tests and x-rays. On this page Tests for pleural mesothelioma Tests for peritoneal mesothelioma Waiting for test results Your GP should urgently refer you for a chest x-ray if you have a history of asbestos exposure, and any of the following symptoms: chest pain difficulty breathing unexplained symptoms, such as shoulder pain, a cough or weight loss. Depending on the results of any tests and x-rays, your GP may refer you to hospital for further tests and for specialist advice and treatment. At the hospital, the specialist will ask you about your general health and any previous medical problems before they examine you. You may be asked questions about any possible exposure to asbestos in your past, such as during jobs you’ve had or at places you’ve worked. This is called your occupational history. You may also be asked if someone in your family, a parent for example, worked with asbestos. Don’t worry if you can’t remember all of the details at first. You can let your doctor know later about anything you remember. Tests for pleural mesothelioma Back to top Pleural mesothelioma often starts as tiny lumps (nodules) in the pleura, which may not show up on scans or x-rays until they’re quite large. You may need to have a number of different tests before your doctors can make an accurate diagnosis. We describe some of these tests here. If you need other tests, your doctors will be able to give you information about them. Chest x-ray A chest x-ray checks for any abnormalities in your lungs, such as thickening of the pleura or fluid around the lungs. There can be other causes of these problems apart from mesothelioma. CT (computerised tomography) scan A CT scan takes a series of x-rays, which build up a three-dimensional picture of the inside of the body. The scan takes 10–30 minutes and is painless. It uses a small amount of radiation, which is very unlikely to harm you and will not harm anyone you come into contact with. You will be asked not to eat or drink for at least four hours before the scan. You may be given a drink or injection of a dye, which allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. It’s important to let your doctor know if you’re allergic to iodine or have asthma, because you could have a more serious reaction to the injection. You’ll probably be able to go home as soon as the scan is over. An image of someone having a CT scan Someone having a CT scan. View a large version of the image of someone having a CT scan. Drainage of fluid from the pleura (pleural aspiration) Mesothelioma cells can irritate the pleura and cause a pocket of fluid to develop. This is called a pleural effusion . Your doctor can take a sample of this fluid to send to the laboratory as mesothelioma cells are sometimes present. The sample is taken by first using a local anaesthetic to numb the area. A needle is then inserted through the skin into the fluid and some of the fluid is removed. This procedure is done while you’re having an ultrasound scan. The scan helps the doctor guide the needle to the place where the fluid is. Biopsy A biopsy is always needed to help the doctors diagnose pleural mesothelioma. It involves taking a sample of tissue from the thickened pleura and, occasionally, from the lymph nodes in the middle of the chest. Your doctor may take a biopsy in different ways: CT or ultrasound guided biopsy A local anaesthetic is used to numb the area. Your doctor will pass a special type of needle through the skin into the thickened area while using an ultrasound or a CT scanner to guide the needle into the right place. The needle has a tip that can cut out a sample of tissue. Thoracoscopy This allows the doctors to look at the area of the pleura directly and also to look at other structures around the lungs and take further biopsies, if required. You’ll be given either a general anaesthetic or a local anaesthetic with a sedative to make you drowsy. A small cut is made in the chest wall and the doctor puts a thin, flexible tube with a light and camera at the end (thoracoscope) into your chest. An ultrasound scan may be used to guide the thoracoscope to the thickened area of pleura. Your doctor can then take a biopsy of the pleura. Mediastinoscopy Occasionally, your doctor may arrange for you to have a mediastinoscopy. This test may be done if your doctors think the mesothelioma has spread to the lymph nodes in the middle of the chest.This procedure is similar to a thoracoscopy and is usually done under a general anaesthetic. A small cut is made in the base of the neck. A thin, flexible tube with a light and camera at the end (mediastinoscope) is inserted through the cut and is used to examine the lymph nodes in the space between the lungs. Biopsies can also be taken, if needed. Having a biopsy can be uncomfortable but shouldn’t be painful. If you have any pain during or after the procedure, let your doctor or nurse know. Once a biopsy has been taken, it’s sent to the laboratory and examined by a pathologist (a doctor who advises on the type and spread of cancer). Sometimes, even after taking a biopsy, the doctors may still not be sure of the diagnosis. This is because pleural mesothelioma can be very difficult to tell apart from some other illnesses. In this situation, the biopsy samples may be sent to other laboratories to confirm the diagnosis. Some of your tests may need to be repeated or you may be referred to another hospital for a second opinion. Tests for peritoneal mesothelioma Back to top A number of similar tests may be used to help diagnose a peritoneal mesothelioma. Abdominal x-ray This can help show up any fluid or swelling in the abdomen. CT (computerised tomography) scan You may have a CT scan of your abdomen. Drainage of fluid from the abdomen (peritoneal aspiration) Mesothelioma cells can cause fluid to collect in the abdomen. This is called ascites. Your doctor can take a sample of this fluid to send to the laboratory as mesothelioma cells are sometimes present. The sample is taken by first using a local anaesthetic to numb the area. A needle is then inserted through the skin into the fluid and some of the fluid is removed. Biopsy A biopsy of the peritoneum is always needed to help the doctors diagnose peritoneal mesothelioma. It can be carried out by: Laparoscopy This procedure allows the doctor to look at other structures in the abdomen and take further biopsies if required. You’ll either be given a general anaesthetic or a local anaesthetic with a sedative to make you drowsy. A small cut is made in the tummy wall and your doctor puts a thin, flexible tube with a light and camera at the end (laparoscope) into your abdomen. Your doctor can then take a small biopsy of the peritoneum. CT or ultrasound guided biopsy The doctor uses an ultrasound or a CT scanner to position the needle accurately for the biopsy. As with pleural mesothelioma, peritoneal mesothelioma may be difficult to diagnose. You may need to have further tests or occasionally be referred to another hospital for a second opinion. Waiting for test results Back to top Waiting for test results can be a difficult time. It may take from a few days to a couple of weeks for the results of your tests to be ready. You may find it helpful to talk with your partner, family or a close friend. Your specialist nurse or one of the organisations listed can also provide support. You can also talk things over with one of our cancer support specialists or you can contact Mesothelioma UK’s helpline.

Detailed staging of mesothelioma

Staging systems are constantly being updated to help doctor plan the best treatment and help give an idea of the likely outcome. Many staging systems are based on the TNM system: T describes the size of the tumour. N describes whether the cancer has spread to the lymph nodes and which nodes are involved. For example, N0 means that no lymph nodes are affected, while N1 means there are cancer cells in the lymph nodes. M describes whether the cancer has spread (metastasised) to another part of the body. For example, M0 means the cancer has not spread to other parts of the body. Pleural mesothelioma Different staging systems have been used for mesothelioma. The staging system that’s most commonly used is known as the International Mesothelioma Interest Group (IMIG) system. It’s also based on the TNM system. A simplified version of the IMIG system is described below. You may find it helpful to refer to the diagram showing the structure of the lungs and pleura in the section explaining what mesothelioma is. Stage 1 Cancer cells are found in the pleura around the lung on one side of the chest. Stage 1a Cancer cells are only found in the outer layer of the pleura (parietal pleura). Stage 1b Cancer cells are also found in the inner layer of the pleura (visceral pleura). Stage 2 The cancer has spread to both layers of the pleura and has either spread into the muscle of the diaphragm or into the lung tissue on one side of the chest. Stage 3 The cancer has spread deeper into the tissues around the pleura. It may have spread to: the chest wall the fatty tissue in the centre of the chest the tissue that separates the ribs from the pleura the outer lining of the heart (pericardium). Or, it may have spread to local lymph nodes. Stage 4 The cancer has spread deeply into the tissues close to the pleura. It may have spread to: the pleura on the other side of the chest the diaphragm and beyond it to the lining surrounding the abdomen (peritoneum) the spine the internal surface of the heart pericardium and into the muscle of the heart. Or, it may have spread to the lymph nodes on the other side of the chest or the lymph nodes above the collar bone on the same or other side of the chest. Or, it may have spread to distant organs or tissues. Peritoneal mesothelioma There isn’t a specific staging system for peritoneal mesothelioma but doctors sometimes use the TNM staging system outlined above.

Financial help and compensation for mesothelioma

Most people who have been diagnosed with mesothelioma are able to receive financial help. There are two main ways of receiving financial help: obtaining benefits paid by the Department for Work and Pensions (DWP) and/or obtaining compensation from your employer (this may be your current employer or a former one who was linked to your exposure to asbestos). Benefits People often assume that benefits paid by the government are means-tested and eligibility depends on your savings and income. It’s important to remember that although some benefits are means-tested, many aren’t. A benefits adviser will be able to tell you more about which benefits you can claim. You can also get more information from our Welfare Rights Advisers by calling the Macmillan Support Line on 0808 808 00 00. Local asbestos support groups may also be able to offer you advice and information about benefits. Mesothelioma UK has a list of support groups. Industrial Injuries Disablement Benefit (IIDB) This is an important benefit that’s payable to people with certain asbestos-related illnesses, including mesothelioma. It’s payable in situations where the illness may have been caused by exposure to asbestos dust at work. It isn’t necessary for a person to have worked with asbestos to get this benefit; they only need to have been exposed to asbestos dust at work. This benefit isn’t paid if you were self-employed in the work that led to the asbestos exposure. IIDB can be paid weekly, every four weeks or every 13 weeks directly into your bank account. It’s worth over £7,200 a year. If you’re awarded IIDB, you may also be entitled to further benefits. You’ll be able to get further information about these from a benefits adviser. Lump sum payments You may be able to get a one-off lump sum payment. There are two types, and which one you can apply for depends on what other benefits you’re entitled to. The Pneumoconiosis etc (Workers’ Compensation) Act 1979 You may be entitled to a lump sum payment under this act if you’ve been awarded Industrial Injuries Disablement Benefit. You can claim this payment: whether or not you’re likely to be able to pursue a claim against the employer you were working for when you were exposed to asbestos dust if the employer is no longer in business if you haven’t already settled a compensation claim. Even if you’re likely to get compensation from the employer’s insurers, it can still be worth pursuing a claim for this benefit. This is because you may receive a payment within weeks of making the application. Diffuse Mesothelioma Scheme 2008 This scheme is for people who can’t claim benefits either under the Industrial Injuries Disablement Benefit or the Pneumoconiosis etc (Workers’ Compensation) Act 1979. Usually, this is because their exposure to asbestos wasn’t as a result of their work as an employee. This can include people who came into contact with asbestos from a relative (for example, by washing their clothes that were contaminated with asbestos dust), or who were exposed while self-employed. Payment is made as a one-off lump sum. The claim must be made within a year of being diagnosed with mesothelioma. You’ll be asked to provide information about your illness, which is available from your doctor. Disability Living Allowance (DLA)/Personal Independence Payment (PIP) or Attendance Allowance (AA) These benefits are for people who have difficulty walking or looking after themselves. DLA is for people under the age of 65. As part of the welfare reforms, DLA will be replaced by PIP, starting from April 2013. AA is for people over the age of 65. If you live in Northern Ireland, you’ll need to check with your benefits adviser which of these benefits to claim. Anyone who is not expected to live longer than six months because of an illness can apply for DLA/PIP or AA under the special rules. Under these rules, the claim will be given priority and will be dealt with more quickly. You’ll also receive the benefit at the highest rate. Statutory Sick Pay and Employment and Support Allowance If you’re an employee and unable to work because of illness, you may be able to get Statutory Sick Pay. This is paid by your employer for up to 28 weeks of sickness. Before your Statutory Sick Pay ends, check whether you can claim Employment and Support Allowance (ESA). This benefit gives financial help to people who are unable to work due to illness or disability. It also provides some support to those who can work. There are two types of ESA: contributory-based (dependent on national insurance contributions) and income-related (means-tested). People may get either or both, depending on their national insurance contribution record, their income and their savings. From October 2013, income-related Employment and Support Allowance will be replaced by Universal Credit. Contributory-based Employment and Support Allowance will stay the same. Help for people who were in the armed forces If you were in the armed forces and you have mesothelioma because you came into contact with asbestos, you may be able to make a claim with the War Pensions Agency (your local office will be in the phone book). You can also call the Service Personnel & Veterans Agency Helpline (0800 169 22 77) for more information. Compensation from your employer Anyone diagnosed with mesothelioma who has worked somewhere where they were exposed to asbestos in the past may be able to claim compensation from their employer. This includes people working in the armed forces who have been exposed to asbestos after 1987. This type of compensation claim requires specialist legal knowledge and must be made through an experienced or specialist solicitor. There are several ways you can find a specialist solicitor. You can ask your specialist nurse or consultant if they can recommend one. Or, you can ask your local asbestos support group as they often work closely with a panel of local specialist solicitors. You can get details of local support groups from Mesothelioma UK. When looking for a solicitor, it’s important to look for one from a large firm of solicitors that has experience dealing, not just with asbestos-related disease claims, but also with mesothelioma claims. You should bear in mind that advertisements and websites may be misleading. Before deciding on a solicitor, you may want to ask them the questions below. Don’t be afraid to ask them to go over anything that you haven’t understood or to ask for more information. Questions to consider Does the solicitor specialise in mesothelioma and asbestos-related lung cancer cases? How many asbestos cases has the solicitor handled in the last three years? How many of these have been dealt with at a court hearing? Is the solicitor a Fellow of the Association of Personal Injury Lawyers (APIL)? Will the solicitor provide you with a free initial consultation? Will the solicitor visit you at home, if necessary? Will the solicitor provide you with a free summary of what will be involved in making your claim? Will the solicitor work on a ‘no win, no fee’ basis? Will the solicitor obtain an insurance policy to cover legal fees? Will the solicitor take a percentage of your compensation? Will you be expected to pay expenses, such as medical report costs and court fees up front? How will you be kept informed of what is happening with your claim? How long will the claims process take? How soon does the solicitor expect to start a court action? For a compensation claim to be successful, you have to show that: It’s likely that your mesothelioma is caused by exposure to asbestos during the course of your work. Or, that you washed clothes of someone who came into contact with asbestos at work. This may be difficult to prove. The legal standard of proof is that 'on the balance of probabilities', the exposure caused the mesothelioma. This means that, although it can’t be certain that the mesothelioma was caused by an employer, it’s more likely than not that it was. Your exposure occurred because your employer at the time was careless (negligent) in not keeping up the standards required by common law or they were in breach of specific safety regulations. An example of this is that you were exposed to asbestos during your employment when your employer knew, or ought to have known, of the risks to you. If a previous employer has gone out of business, it may be possible to claim against the employer’s insurers. Claims must be started within three years of the date you were first diagnosed with an injury due to asbestos. This doesn’t mean three years from the date of asbestos exposure, but three years from the time you were told that you had an asbestos-related illness. In Scotland, the claim must be raised in court in the three-year period or it will be time-barred. Sometimes, you may think you have a claim but your employer has gone out of business and your employer’s insurer can no longer be traced. However, tracing an employer is often possible. Costs of claiming compensation Making a personal injury compensation claim shouldn’t cost you a lot of money, if any. Specialist solicitors should offer a free initial consultation and to deal with your claim on a ‘no win, no fee’ basis. They will also come to visit you at home, if needed. Make sure you discuss with the solicitor the various options for funding, before any claim is started. If you’re a member of a trade union or a professional association, or you have legal expenses insurance cover, let your solicitor know. If your solicitor is prepared to take your case on a ‘no win, no fee’ basis, then you may have to pay a one-off insurance premium. The insurance premium will protect you against the risk of having to pay your employer’s legal costs. It may also cover other expenses that have to be paid to progress your claim, such as a fee to the medical expert for a report in support of your claim. Payment of the insurance premium may be delayed until the case is finished - ask your solicitor about this. If your case is successful, the insurance will be paid (in part, if not in full) by the other party. In Scotland, people making a claim may be entitled to Legal Aid. But, if insurance is available, the premium won’t be repaid, even if the claim is successful. Compensation for family members Relatives of people who have died from mesothelioma may be able to claim compensation for their relative’s pain and suffering, and some financial losses suffered as a result of the illness. It’s helpful to get legal advice from a specialist solicitor on how to make a claim.

After treatment for mesothelioma – follow-up

Following treatment, your hospital doctor, GP or nurse specialist will organise for you to have regular check-ups. They will continue to monitor your symptoms and will aim to give you further treatments, if these are needed to control your symptoms. If you have any concerns or symptoms that you’re worried about, let your doctor or specialist nurse know as soon as possible. You don’t have to wait until your next appointment (if you have one booked). Many people find they get very anxious for a while before appointments. This is natural and it may help to get support from family and friends. You can also find details of useful organisations in our resources and organisations section. Rehabilitation and recovery Mesothelioma affects people in different ways. Some people find that they need to take things more slowly for a while after treatment, especially if they’ve been in hospital or have had to rest at home for long periods. Others find that it doesn’t take them long to get back to their normal routine. If you think you need extra help at home, let the doctors or nurses who are looking after you know. They can assess your needs and organise extra support. They can also arrange for you to see a physiotherapist if you need help with your mobility or advice on breathing exercises. Share your experience When treatment finishes, many people find it helps to talk about it and share their thoughts, feelings and advice with other people. This can be especially helpful for other people with mesothelioma who are perhaps about to start their treatment. Just hearing about how you’ve coped, what side effects you had and how you managed them is very helpful to someone in a similar situation. We can help you share your story. Call us or read our information about becoming a Cancer Voice. You might also want to join our Online Community to chat to other people who might be feeling the same as you.

Research - clinical trials for mesothelioma

Cancer research trials are carried out to try to find new and better treatments for cancer. Trials that are carried out on patients are known as clinical trials. Clinical trials may be carried out to: test new treatments, such as new chemotherapy drugs or targeted therapies look at new combinations of existing treatments, or change the way they are given to make them more effective or reduce side effects compare the effectiveness of drugs used to control symptoms find out how cancer treatments work find out which treatments are the most cost-effective. Trials are the only reliable way to find out if a different type of surgery, chemotherapy, hormone therapy, radiotherapy, or other treatment is better than what is already available. Taking part in a trial You may be asked to take part in a treatment research trial. There can be many benefits in doing this. Trials help to improve knowledge about cancer and develop new treatments. You will be carefully monitored during and after the study. Usually, several hospitals around the country take part in these trials. It’s important to bear in mind that some treatments that look promising at first are often later found not to be as good as existing treatments or to have side effects that outweigh the benefits. If you decide not to take part in a trial, your decision will be respected and you don’t have to give a reason. However, it can help to let the staff know your concerns so that they can give you the best advice. There will be no change in the way that you’re treated by the hospital staff, and you’ll be offered the standard treatment for your situation. We have more information about cancer research trials (clinical trials) available. Blood and tumour samples Blood and bone marrow or tumour samples may be taken to help make the right diagnosis. You may be asked for your permission to use some of your samples for research into cancer. If you’re taking part in a trial, you may also be asked to give other samples which may be frozen and stored for future use, when new research techniques become available. These samples will have your name removed from them so you can’t be identified. The research may be carried out at the hospital where you are treated, or at another one. This type of research takes a long time, and results may not be available for many years. The samples will, however, be used to increase knowledge about the causes of cancer and its treatment. This research will hopefully improve the outlook for future patients. Current research Your doctors will be able to tell you about any current mesothelioma trials and whether they are suitable for you. Find out more about research trials on mesothelioma on our clinical trials database.