A practical guide to understanding cancer
About this booklet 1
About this booklet This booklet is about a type of cancer called mesothelioma. It is about the diagnosis and treatment of the two main types of mesothelioma: pleural and peritoneal mesothelioma. They are treated in different ways and the treatment of each type is covered separately. We hope it answers some of your questions about diagnosis and treatment, and addresses the feelings you may have. We can’t advise you about the best treatment for yourself. This information can only come from your own doctor, who knows your full medical history. Pages 119–124 have useful addresses and websites, and page 125 has space for you to write down any questions you want to ask your doctor or nurse. In this booklet we’ve included quotes from people affected by cancer, which you might find helpful. Some are from healthtalk.org Others are from people who have chosen to share their experience on our online community website community.macmillan.org.uk Mesothelioma UK provides specialist information and support to people with mesothelioma. You can contact them on freephone 0800 169 2409 (open Monday–Friday, 8.30am–4.30pm).
2 Understanding mesothelioma
If you would like to discuss this information, call the Macmillan Support Line free on 0808 808 00 00, Monday–Friday, 9am–8pm. If you’re hard of hearing you can use textphone 0808 808 0121, or Text Relay. For non-English speakers, interpreters are available. If you have found this booklet helpful, you may like to pass it on to your family and friends so they can help and support you.
Contents Contents 3 3
Contents Mesothelioma
5
Diagnosing mesothelioma
21
Treating mesothelioma
37
Af ter treatment
75
Financial help and work
81
Your feelings and relationships
97
Information for carers
107
Further information
113
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
Mesothelioma What is cancer?
6
The lymphatic system
8
Mesothelioma9 Risk factors and causes
14
Symptoms18
6 Understanding mesothelioma
What is cancer? Cancer starts in cells in our body. Cells are tiny building blocks that make up the organs and tissues of our bodies. They divide to make new cells in a controlled way. This is how our bodies grow, heal and repair. Cells receive signals from the body telling them when to divide and grow and when to stop growing. When a cell is no longer needed or can’t be repaired, it gets a signal to stop working and die. Cancer develops when the normal workings of a cell go wrong and the cell becomes abnormal. The abnormal cell keeps dividing making more and more abnormal cells. These eventually form a lump (tumour). Not all lumps are cancerous. Doctors can tell if a lump is cancerous by removing a small sample of tissue or cells from it. This is called a biopsy. The doctors examine the sample under a microscope to look for cancer cells.
Normal cells
Cells forming a tumour
Mesothelioma 7
A lump that is not cancerous (benign) may grow but cannot spread to anywhere else in the body. It usually only causes problems if it puts pressure on nearby organs. A lump that is cancer (malignant) can grow into nearby tissue. Sometimes, cancer cells spread from where the cancer first started (the primary site) to other parts of the body. They can travel through the blood or lymphatic system (see page 8). When the cells reach another part of the body, they may begin to grow and form another tumour. This is called a secondary cancer or a metastasis.
8 Understanding mesothelioma
The lymphatic system The lymphatic system is part of the immune system – the body’s natural defence against infection and disease. It’s made up of organs such as bone marrow, the thymus, the spleen, and lymph nodes. The lymph nodes throughout the body are connected by a network of tiny lymphatic tubes (ducts). The lymphatic system has two main roles: it helps to protect the body from infection and it drains fluid from the tissues. Mesothelioma can spread to the lymph nodes in the chest.
The lymphatic system
Neck (cervical) lymph nodes Thymus Armpit (axillary) lymph nodes Diaphragm Spleen
Groin (inguinal) lymph nodes
Mesothelioma 9
Mesothelioma More than 2,500 people are diagnosed with mesothelioma in the UK each year. Mesothelioma is a tumour of the mesothelium. This is a thin lining (membrane) that covers the outer surface of most of our body’s organs. The mesothelium has different names in different parts of the body. For example: •• in the chest it’s called the pleura •• in the abdomen it’s called the peritoneum. Cancer of the mesothelium is called malignant mesothelioma. However, it’s usually referred to simply as mesothelioma. There are two main types of mesothelioma: pleural mesothelioma and peritoneal mesothelioma. Pleural mesothelioma is much more common than peritoneal mesothelioma.
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Pleural mesothelioma The lungs are covered by a membrane or lining, called the pleura. It has an inner and outer layer. The inner layer covers the lungs, and the outer layer lines the ribcage. The pleura produces a fluid that acts as a lubricant, which helps you to breathe easily and allows the lungs to move in and out smoothly. When mesothelioma develops in the pleura, the layers of the pleura thicken and press inwards on the lung. Fluid may also collect between the two layers. This is called a pleural effusion (see page 59).
Mesothelioma 11
Structure of the lungs and pleura Windpipe (trachea)
Right bronchus Pleural cavity
Lymph nodes Outer pleura Left bronchus
Inner pleura
12 Understanding mesothelioma
Peritoneal mesothelioma The organs in the tummy (abdomen) are covered by a membrane or lining called the peritoneum. It also has an inner and outer layer. The inner layer covers the abdominal organs and the outer layer lines the abdominal wall. The peritoneum helps protect the organs in the abdomen and keep them in place (shown as the thick line surrounding the abdominal organs in the illustration below). When mesothelioma develops in the peritoneum, it causes the layers of the peritoneum to thicken. Fluid may also collect between the two layers. This is known as ascites (see page 63).
Side view of the abdomen
Peritoneum
Bowel
Womb Bladder Rectum (back passage)
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Cell types of mesothelioma Pleural and peritoneal mesothelioma can be grouped according to how the cells look under a microscope. There are three main types: •• epitheloid – this is the most common •• sarcomatoid (fibrous) •• mixed (biphasic) – this has both epitheloid and sarcomatoid cells. Knowing the type of cell involved may give your doctors an idea of how well the disease will respond to treatment.
Rare types of mesothelioma Very rarely, mesothelioma may develop in the outer lining of the heart (pericardial mesothelioma) or in the outer lining of the testes (testicular mesothelioma). These are not discussed in this booklet. If you’d like information about them, contact our cancer support specialists on 0808 808 00 00.
14 Understanding mesothelioma
Risk factors and causes Asbestos Asbestos is the most common cause of mesothelioma. Up to 9 out of 10 cases of mesothelioma (90%) are caused by exposure to asbestos fibres. Asbestos is a natural mineral found in many countries. It acts as an insulator (to keep heat in and cold out) and it protects against fire and corrosion. There are three main types of asbestos: blue (crocidolite), brown (amosite) and white (chrysotile). These were used in UK industries until the ban on imports of blue and brown asbestos in the 1980s and on all types in 1999. Exposure to blue and brown asbestos is commonly linked with mesothelioma. However, exposure to all types of asbestos is harmful. Mesothelioma doesn’t usually develop until many years after exposure to asbestos. It can take any time from 15–60 years, although the average is about 30–40 years after exposure.
Mesothelioma 15
Pleural mesothelioma
When asbestos is disturbed or damaged, it releases tiny fibres. These can be breathed into the lungs. Asbestos fibres are very fine and can make their way into the smallest airways of the lungs. Once the fibres are in the lungs, the body’s defence mechanisms try to break them down and remove them. This leads to inflammation in the lung tissue. The asbestos fibres can also travel through the lung tissue and settle in the outer lining of the lung (the pleura). Over many years they can cause pleural mesothelioma or other lung diseases to develop.
Peritoneal mesothelioma
Asbestos fibres can also be swallowed, and some of the fibres can stick in the digestive system. They can then move into the outer lining of the abdomen (the peritoneum). Here, they cause swelling and thickening of the lining and can lead to peritoneal mesothelioma.
16 Understanding mesothelioma
Exposure to asbestos
People most likely to have been exposed to asbestos at work include: •• joiners and construction workers •• plumbers •• electricians •• boilermakers •• shipbuilders. As these jobs were mostly done by men, mesothelioma is five times more common in men than in women. People who haven’t worked directly with asbestos can also sometimes develop mesothelioma. These can include: •• family members of people who’ve worked with asbestos and brought the dust home on their clothes •• people who lived near asbestos factories •• people who worked in buildings containing asbestos materials that were disturbed or damaged. If you develop an asbestos-related illness you may be entitled to certain benefits and compensation (see pages 82–93). We have further information on compensation claims in the Financial help section (pages 89–93).
Mesothelioma 17
Other causes Occasionally, mesothelioma develops in people who have never knowingly been exposed to asbestos. The other causes of the disease are not fully understood, but, in rare cases, mesothelioma has been linked to: •• exposure to radiation •• a mineral called erionite, which has been found in Turkey and North America. Mesothelioma isn’t infectious and can’t be passed on to other people. It isn’t caused by inherited altered genes, so family members don’t have an increased risk of developing it, unless they have also been exposed to asbestos.
18 Understanding mesothelioma
Symptoms Symptoms of mesothelioma vary depending on whether it is in the pleura or peritoneum.
Pleural mesothelioma The symptoms of pleural mesothelioma may include: •• shortness of breath •• chest pain that feels heavy, dull or aching •• fever •• weight loss •• loss of appetite •• a cough that doesn’t go away •• fatigue.
Peritoneal mesothelioma The symptoms of peritoneal mesothelioma may include: •• 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.
Mesothelioma 19
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.
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
Diagnosing mesothelioma How mesothelioma is diagnosed
22
Staging33
22 Understanding mesothelioma
How mesothelioma is diagnosed Usually, you begin by seeing your family doctor (GP). They will examine you and may arrange for you to have some blood tests and x-rays. Your GP should urgently refer you for a chest x-ray (see next page) if you have a history of asbestos exposure, and any of the following symptoms: •• cough •• fatigue •• shortness of breath •• chest pain •• weight loss •• loss of appetite. Depending on the results of any tests and x-rays, your GP may refer you to hospital for further tests and 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.
Diagnosing mesothelioma 23
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 Pleural mesothelioma often starts as tiny lumps (nodules) in the pleura. These 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. Tests you may have include:
Chest x-ray
A chest x-ray checks for any abnormalities in your lungs.
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.
24 Understanding mesothelioma
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 are 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.
Someone having a CT scan
Diagnosing mesothelioma 25
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 (see page 59). Your doctor may take a sample of this fluid to send to the laboratory as mesothelioma cells are sometimes present. They will give you a local anaesthetic to numb the area. A needle is then inserted through the skin into the fluid and some fluid is removed. You will have an ultrasound scan while the procedure is being carried out. This helps the doctor guide the needle to the place where the fluid is.
Pleural biopsy
A biopsy is usually 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 then pass a special type of needle through the skin into the thickened area. An ultrasound or CT scanner will be used to help them guide the needle into the right place. The needle has a tip that can cut out a sample of tissue.
26 Understanding mesothelioma
Thoracoscopy This allows the doctors to look at the pleura and other structures around the lungs. The doctor can take 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 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. Sometimes doctors use a video camera with the thoracoscope. This is called video-assisted thoracoscopy (VATS) and it can help doctors get a better view of the area surrounding the lung. Pleurodesis If your doctor drains off fluid during any of these tests or procedures, they may also do a procedure called pleurodesis to try and prevent the fluid from returning. They will put sterile talcum powder through the tube in your chest and into the pleural space. This helps stop the fluid from building up again (see page 60). Mediastinoscopy Very occasionally, your doctor may arrange for you to have a mediastinoscopy. This test allows the doctor to look at the area at the centre of your chest (mediastinum) and the lymph nodes closest to the lungs. You may have this test if your doctors think the mesothelioma has spread to the lymph nodes in the middle of the chest (see page 8). It is done under a general anaesthetic and you will have a short stay in hospital.
Diagnosing mesothelioma 27
A small cut is made in the skin at the base of your neck, and a thin flexible tube is passed into your chest. The tube has a light and camera at the end (mediastinoscope), and can magnify the areas it looks at. The doctor can see any abnormal areas, and may also take samples of the cells and lymph nodes (biopsies) to examine under a microscope.
Biopsy
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.
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
Diagnosing mesothelioma 29
Tests for peritoneal mesothelioma You may have a number of tests to help diagnose a peritoneal mesothelioma. These may include:
Abdominal x-ray
This checks for any abnormalities in your tummy.
CT 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 are 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.
30 Understanding mesothelioma
MRI (magnetic resonance imaging) scan
This test uses magnetism to build up a detailed picture of areas of your body. The scanner is a powerful magnet so you may be asked to complete and sign a checklist to make sure it’s safe for you. The checklist asks about any metal implants you may have, such as a pacemaker, surgical clips or bone pins, etc. You should also tell your doctor if you’ve ever worked with metal or in the metal industry as very tiny fragments of metal can sometimes lodge in the body. If you do have any metal in your body, it’s likely that you won’t be able to have an MRI scan. In this situation, another type of scan can be used. Before the scan, you’ll be asked to remove any metal belongings including jewellery. Some people are given an injection of dye into a vein in the arm, which doesn’t usually cause discomfort. This is called a contrast medium and can help the images from the scan to show up more clearly. During the test, you’ll lie very still on a couch inside a long cylinder (tube) for about 30 minutes. It’s painless but can be slightly uncomfortable, and some people feel a bit claustrophobic. It’s also noisy, but you’ll be given earplugs or headphones. You can hear, and speak to, the person operating the scanner.
Diagnosing mesothelioma 31
Drainage of fluid from the abdomen (peritoneal aspiration)
Mesothelioma cells can cause fluid to collect in the abdomen. This is called ascites (see page 63–64). Your doctor may take a sample of this fluid to send to the laboratory as mesothelioma cells are sometimes present. Your doctor will give you a local anaesthetic to numb the area. A needle will then be inserted through the skin into the fluid and some fluid is removed. Sometimes the sample of fluid is taken while you’re having an ultrasound scan. The scan helps the doctor guide the needle to the fluid.
Peritoneal biopsy
A biopsy of the peritoneum is usually 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 your 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. Your doctor will make a small cut in the tummy wall. They will then put a thin tube with a light and camera at the end (laparoscope) into your tummy. Your doctor can then take a small biopsy of the peritoneum. •• CT or ultrasound guided biopsy You will have a local anaesthetic to numb the area. Your doctor will then pass a special type of needle through the tummy into the area they want to biopsy. They will use an ultrasound or a CT scanner to help them guide the needle into the right place. The needle has a tip that can cut out a sample of tissue.
32 Understanding mesothelioma
Biopsy
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 peritoneal 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.
Waiting for test results 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 on pages 119–124, can also provide support. You can also talk things over with one of our cancer support specialists on 0808 808 00 00.
Diagnosing mesothelioma 33
Staging The stage of a cancer refers to its size and whether it has spread beyond the area of the body where it first started. Knowing the extent of the cancer helps the doctors decide on the most appropriate treatment for you. There are a number of different staging systems. Many are based on the TNM system where: •• T describes the size of the cancer. •• 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, while M1 means the cancer has spread to other parts of the body.
Pleural mesothelioma The staging system that’s most commonly used for pleural mesothelioma is called the International Mesothelioma Interest Group (IMIG) system. It’s based on the TNM system. A simplified version of the IMIG system is described on pages 34–35. You may find it helpful to refer to the diagram showing the structure of the lungs and pleura on page 11.
34 Understanding mesothelioma
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 •• fatty tissue in the centre of the chest •• tissue that separates the ribs from the pleura •• outer lining of the heart (pericardium). Or, it may have spread to local lymph nodes.
Diagnosing mesothelioma 35
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 •• diaphragm and the lining surrounding the abdomen (peritoneum) •• spine •• 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 collarbone 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 described on page 33.
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
Treating mesothelioma Treatment overview
38
Treatment for pleural mesothelioma
44
Treatment for peritoneal mesothelioma
56
Other treatments (supportive therapies)
59
Treatments to control other symptoms of mesothelioma 66 Research – clinical trials
71
38 Understanding mesothelioma
Treatment overview Chemotherapy, radiotherapy and surgery may all be used to treat mesothelioma. Pleural and peritoneal mesothelioma are treated in different ways. We have split the information about treatment into two sections so you can read the information that’s relevant to your type of mesothelioma. •• You can read about treatment for pleural mesothelioma on page 44. •• You can read about treatment for peritoneal mesothelioma on page 56. Some information about treatment is relevant to both types of mesothelioma. This includes information about: •• treatments to control symptoms and help you feel more comfortable. This is known as supportive or palliative care (see page 59). •• taking part in a clinical trial (see pages 71–72). The next section explains how treatment is planned. There’s also information about the benefits and disadvantages of treatment and giving your consent.
Treating mesothelioma 39
Multidisciplinary team If your tests show that you have mesothelioma, a team of specialists, called a multidisciplinary team (MDT) will plan your treatment and care. In a number of areas of the UK there are regional specialist mesothelioma MDTs. This team will normally include: •• chest physicians – doctors experienced in lung disease (if you have pleural mesothelioma) •• oncologists – doctors experienced in using chemotherapy and radiotherapy to treat mesothelioma •• surgeons experienced in chest surgery (if you have pleural mesothelioma) or abdominal surgery (if you have peritoneal mesothelioma) •• specialist nurses who give information and support •• symptom-control specialists •• radiologists who help analyse x-rays •• pathologists who advise on the type and extent of cancer. It may also include other healthcare professionals, such as a physiotherapist, counsellor, psychologist, social worker or dietitian. The MDT will take a number of factors into account when planning your treatment and care. These include the type and stage of your mesothelioma and your general health. Occasionally, you may be offered a choice of treatments. If this happens, make sure you have enough information about the different treatments, what’s involved and the possible side effects, to help you make the right decision.
40 Understanding mesothelioma
If you have any questions about your treatment, don’t be afraid to ask your doctor or nurse. It often helps to make a list of questions and to take a relative or close friend with you. You can use page 125 of this booklet to write down your questions and the answers you receive.
The benefits and disadvantages of treatment Many people are frightened at the idea of having cancer treatments, particularly because of the side effects that can occur. However, these can usually be controlled with medicines. Treatment can be given for different reasons and the potential benefits will vary depending upon your individual situation. For many people with mesothelioma, the cancer has already spread when it’s diagnosed and treatment is given with the aim of slowing the growth of the cancer. This can lead to an improvement in symptoms and a better quality of life. However, for some people, the treatment will have no effect on the cancer and they will get the side effects of the treatment with little benefit. Making decisions about treatment in these circumstances is always difficult, and you may need to discuss in detail with your doctor or specialist nurse whether you wish to have treatment. If you choose not to have it, you will be offered supportive (palliative) care, with medicines to control any symptoms. It’s important that you ask your doctors and nurses any questions you have about your treatment. The more you understand about your treatment, the easier it will be for you and them. You may find it useful to read our booklet, Making treatment decisions. We can send you a copy.
Treating mesothelioma 41
Giving your consent Before you have any treatment, your doctor will explain its aims. They will usually ask you to sign a form saying that you give permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form you should be given full information about: •• the type and extent of the treatment •• its advantages and disadvantages •• any significant risks or side effects •• any other treatments that may be available. If you don’t understand what you’ve been told, let the staff know straight away, so they can explain again. Some cancer treatments are complex, so it’s not unusual to need repeated explanations. It’s a good idea to have a relative or friend with you when the treatment is explained, to help you remember the discussion. You may also find it useful to write a list of questions before your appointment. People sometimes feel that hospital staff are too busy to answer their questions, but it’s important for you to know how the treatment is likely to affect you. The staff should be willing to make time for your questions. You can always ask for more time if you feel that you can’t make a decision when your treatment is first explained to you.
42 Understanding mesothelioma
You are also free to choose not to have the treatment. The staff can explain what may happen if you don’t have it. It’s essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You don’t have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice.
Second opinion Your multidisciplinary team (MDT) uses national treatment guidelines to decide the most suitable treatment for you. Even so, you may want another medical opinion. If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion. Getting a second opinion may delay the start of your treatment, so you and your doctor need to be confident that it will give you useful information. If you do go for a second opinion, it may be a good idea to take a relative or friend with you, and have a list of questions ready, so that you can make sure your concerns are covered during the discussion.
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
44 Understanding mesothelioma
Treatment for pleural mesothelioma Treatment overview For most people, treatment is given to help control symptoms and to slow the growth of the pleural mesothelioma. Treatments may include chemotherapy (see below), radiotherapy (see page 50) and other treatments, sometimes known as supportive therapies (see page 59). Very occasionally, if mesothelioma is diagnosed before it’s spread or if it’s only spread to nearby tissues, surgery may be an option (see page 54).
Chemotherapy for pleural mesothelioma Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. The drugs disrupt the way cancer cells grow and divide but they also affect normal cells. You may be offered chemotherapy to help slow the growth of your mesothelioma, shrink your mesothelioma and control and improve symptoms such as pain and breathlessness. Your doctor will let you know if it’s a suitable treatment for you. You can see a photo of someone having chemotherapy on the previous page.
Treating mesothelioma 45
How chemotherapy is given
Chemotherapy drugs for pleural mesothelioma are usually given by injection into a vein (intravenously). Each session of chemotherapy may last between one and a few days, and is followed by a rest period of a few weeks. This is known as a cycle of treatment. The number of cycles you have depends on the stage of your cancer and how well it’s responding to treatment.
The drugs that are used
The most commonly used drugs to treat pleural mesothelioma are pemetrexed (Alimta®) together with cisplatin (or sometimes carboplatin). You’ll usually be given these drugs on the same day as an outpatient. You’ll then have a rest with no chemotherapy for 20 days before starting your next cycle of treatment. If you have pemetrexed, you’ll be given the vitamins B12 and folic acid. These help to reduce side effects of treatment without reducing its effectiveness. Other chemotherapy drugs may sometimes be used. These may be given as part of a clinical trial. We can send you information about these chemotherapy drugs and their side effects. We can also send you a booklet on chemotherapy, which has more detailed information.
46 Understanding mesothelioma
Side effects of chemotherapy
Chemotherapy drugs can affect some of the healthy cells in your body and this can cause side effects. Most side effects will go away when treatment is over. Each person’s reaction to chemotherapy is different. Some people have very few side effects, while others may experience more. The most common side effects of pemetrexed and cisplatin are: Risk of infection Pemetrexed and cisplatin can reduce the number of white cells in your blood. This will make you more likely to get an infection. Your white blood cells start to reduce seven days after treatment and are usually at their lowest 10–14 days after. When the number of white blood cells is low it’s called neutropenia. Contact the hospital straight away on the contact number you’ve been given if: •• your temperature goes over 37.5°C (99.5°F) or over 38°C (100.4°F), depending on the advice given by your chemotherapy team •• you suddenly feel unwell, even with a normal temperature •• you have symptoms of an infection – this can include feeling shaky, a sore throat, a cough, diarrhoea or needing to pass urine a lot. Your white cells usually increase steadily and return to normal before your next treatment. You will have a blood test before having more chemotherapy. If your blood cells are still low, your doctor may delay your treatment for a short time.
Treating mesothelioma 47
Bruising and bleeding Pemetrexed and cisplatin can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor if you have any bruising or bleeding you can’t explain. This includes nosebleeds, bleeding gums, blood spots or rashes on the skin. Some people may need a drip to give them extra platelets. Anaemia (low red cells) Pemetrexed and cisplatin can reduce the number of red cells in your blood. These cells carry oxygen around the body. If they are low you may be tired and breathless. Tell your doctor or nurse if you feel like this. If you are very anaemic, you may need a drip to give you extra red cells (blood transfusion). Feeling sick This may happen in the first few days after chemotherapy. Your doctor will prescribe anti-sickness (anti-emetic) drugs to help prevent or control sickness. Take the drugs exactly as your nurse or pharmacist explains to you. It’s easier to prevent sickness than to treat it after it has started. If you still feel sick or are vomiting, contact the hospital as soon as possible. They can give you advice and change the anti‑sickness drug to one that works better for you. Sore mouth Your mouth may become sore or dry, or you may notice small ulcers during treatment. Drinking plenty of fluids, and cleaning your teeth regularly and gently with a soft toothbrush, can help to reduce the risk of this happening. Tell your nurse or doctor if you have any of these problems, as they can prescribe mouthwashes and medicine to prevent or clear mouth infections.
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Diarrhoea Your doctor can prescribe drugs to control diarrhoea. Let them know if it is severe or if it doesn’t get better. Make sure you drink at least two litres (three and a half pints) of fluids every day if you have diarrhoea. Numbness or tingling in hands or feet These symptoms are caused by the effect of cisplatin on nerves. It’s called peripheral neuropathy. You may also find it hard to fasten buttons or do other fiddly tasks. Tell your doctor if you have these symptoms. They sometimes need to lower the dose of the drug. The symptoms usually improve slowly after treatment finishes but in some people they may never go away. Talk to your doctor if you are worried about this.
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Tiredness (fatigue) Feeling very tired is a common side effect. It’s often worse towards the end of treatment and for some weeks after it’s finished. Try to pace yourself and get as much rest as you need. It helps to balance this with some gentle exercise, such as short walks. If you feel sleepy, don’t drive or operate machinery. Eye problems Pemetrexed may make your eyes feel sore, red and itchy (conjunctivitis). Your doctor will prescribe eye drops to prevent this. It’s important to use these as instructed. Hearing changes Cisplatin can affect your hearing. You may have a hearing test before you start treatment. During treatment you may get ringing in your ears (tinnitus) and lose the ability to hear some high‑pitched sounds. Tinnitus usually gets better after treatment ends. Some hearing changes can be permanent. Tell your doctor if you notice any changes in your hearing. Hair loss Your hair will thin. Very rarely people lose all the hair from their head. Hair loss usually starts after your first or second cycle of chemotherapy. It is almost always temporary and your hair will grow back after chemotherapy ends. It is important to cover your head to protect your scalp when you are out in the sun. Your nurse can give you advice about coping with hair loss. Although they may seem hard to bear at the time, most of the side effects are temporary and will disappear once your treatment is over. We can send you more information on coping with the side effects of chemotherapy.
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Radiotherapy for pleural mesothelioma Radiotherapy treats cancer by using high-energy x-rays to destroy cancer cells, while doing as little harm as possible to normal cells. It is normally given as a series of short, daily outpatient treatments in the radiotherapy department. It uses equipment which looks similar to a large x-ray machine. Radiotherapy may be given: •• to help relieve symptoms such as pain and breathlessness •• alongside surgery and chemotherapy (this may be as part of a clinical trial – see page 71) •• to the chest wall at the place where a biopsy has been done or a drainage tube has been inserted. The radiotherapy may prevent the tumour from growing out through the scar – trials are looking at how effective it is. Sometimes only one or two treatments are needed, but more often a course of treatment is given over a few days or weeks.
Planning radiotherapy
Before you start your treatment it needs to be planned. Planning makes sure that the radiotherapy is aimed precisely at the cancer so that it causes the least possible damage to the surrounding healthy tissue. All radiotherapy treatments are planned on an individual basis by your clinical oncologist, a physicist and sometimes by a senior or specialist radiographer. Your first planning visit will take 30–60 minutes. The staff in the radiotherapy department will explain what to expect. It‘s important for you to feel that you’re involved in your treatment, so feel free to ask as many questions as you need to.
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You’ll usually have a CT (computerised tomography) scan taken of the area to be treated. You may have some marks drawn on your skin to help the radiographer to position you accurately and set where the treatment will be delivered. It’s important not to rub them off until your treatment is finished. Sometimes tiny, permanent marks are made on the skin. At the beginning of your radiotherapy you’ll be given instructions on how to look after your skin.
Treatment sessions
At the beginning of each session of radiotherapy, the radiographer will position you carefully on the treatment couch and make sure you’re comfortable. Once you’re in the correct position the radiographers will leave the room and you’ll be given your treatment. They will tell you how long your treatment will take before you start. Radiotherapy isn’t painful, but you will have to lie still for a few minutes during the treatment. The radiographers will be able to see you and many treatment rooms also have an intercom in the treatment room so they can talk to you during your treatment.
‘I went through a period when my chest started to get very, very tight and thick with phlegm. I was put on radiotherapy and that stopped the phlegm coming up on my chest which helped me breathe a bit easier.’ Martin
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Side effects of radiotherapy
You may develop side effects while you are having your radiotherapy treatment. These usually disappear gradually over a few weeks or months after treatment finishes. Your doctor, radiographer or nurse will discuss this with you so you know what to expect. Let them know about any side effects you have during or after treatment, as there are often things that can be done to help. Tiredness Not everyone feels tired during radiotherapy treatment but many people do. If you feel tired, get plenty of rest but balance this with some gentle exercise, such as short walks. This will give you more energy and help to keep your muscles working. Save some energy for doing the things you enjoy and ask others for help doing chores if these are tiring you out. Skin reactions Some people develop a skin reaction while having radiotherapy. How your skin reacts will vary depending on the amount of radiotherapy you are having. Your doctor, radiographer or nurse will tell you how to look after your skin during and after treatment. Difficulty swallowing After a week or two of treatment, you may find it difficult to swallow. You may also have heartburn and indigestion. This happens because the radiotherapy can cause inflammation in the tube that runs from your mouth to your stomach, called the gullet (oesophagus). Tell your doctors if you have problems swallowing, as they can give you medicines to help. If you don’t feel like eating, or have problems with swallowing, you can replace meals with nutritious, high-calorie drinks. These are available from most chemists and can be prescribed by your GP.
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Cough You may develop a cough while you are having your radiotherapy. This usually settles within a few weeks of finishing your treatment. If it doesn’t settle, or if you develop a temperature, tell your doctor, radiographer or specialist nurse as you may have an infection. Feeling sick Some people find that their treatment makes them feel sick (nausea) and sometimes they may be sick (vomit). Your doctor (or sometimes a nurse or radiographer) can prescribe effective anti-sickness drugs if this happens. Tell your doctor, nurse or radiographer if you have any nausea or vomiting. We can send you more information about coping with nausea and vomiting. These side effects should disappear gradually once your course of treatment is over, but it’s important to let your doctor know if they continue. We can send you more information on coping with these side effects. Radiotherapy does not make you radioactive and it’s perfectly safe for you to be with other people, including children, throughout your treatment.
Our booklet Understanding radiotherapy explains this treatment in more detail.
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Surgery for pleural mesothelioma Surgery is only suitable for some people with pleural mesothelioma. The aim of surgery is to help with symptoms and to control the disease rather than to cure it. The operation will be done by a specialist chest surgeon who is experienced in the treatment of mesothelioma. An operation may be carried out as part of a clinical trial.
Pleurectomy/decortication (PD)
A pleurectomy/decortication involves removing only the tumour and pleura. The lung tissue is not removed.
Extended pleurectomy/decortication (EPD)
As well as removing the tumour and pleura, the surgeon will also remove the covering of the heart (pericardium) and the muscle between the lung and the abdomen (diaphragm).
Partial pleurectomy
A partial pleurectomy is occasionally used to help stop fluid building up in the lung. This can help reduce breathlessness and pain. It can also help a collapsed lung to reinflate with air, which will help reduce breathlessness. It may be possible to have a partial pleurectomy using keyhole surgery. With this type of surgery, only small openings are made instead of one large cut (incision). If surgery is a suitable treatment for you, your doctor will tell you more about what to expect.
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Treatment for peritoneal mesothelioma Treatment overview For most people, treatment is given to help control symptoms and to slow the growth of peritoneal mesothelioma. Treatment may include chemotherapy (see below) and other treatments, sometimes known as supportive therapies (see page 59). Very occasionally surgery (see page 54) with chemotherapy may be a treatment option.
Chemotherapy for peritoneal mesothelioma Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. They disrupt the way cancer cells grow and divide but they also affect normal cells. You may be offered chemotherapy to help slow the growth of your mesothelioma and control symptoms. Your doctor will let you know if it’s a suitable treatment for you.
How chemotherapy is given
Chemotherapy drugs for peritoneal mesothelioma are usually given by injection into a vein (intravenously). Each session of chemotherapy may last between one and a few days, and is followed by a rest period of a few weeks. This is known as a cycle of treatment. The number of cycles you have will depend on the stage of your cancer and how well it is responding to treatment.
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The drugs that are used
The most commonly used drugs to treat peritoneal mesothelioma are pemetrexed (Alimta®) together with cisplatin (or sometimes carboplatin). You’ll usually be given these drugs on the same day as an outpatient. You’ll then have a rest with no chemotherapy for 20 days before starting your next cycle of treatment. If you have pemetrexed, you’ll be given the vitamins B12 and folic acid. These help to reduce side effects of treatment without reducing its effectiveness. Other chemotherapy drugs may sometimes be used. These may be given as part of a clinical trial. We can send you information about these chemotherapy drugs and their side effects. We can also send you a booklet on chemotherapy, which has more detailed information.
Side effects
Chemotherapy drugs can affect some of the healthy cells in your body and this can cause side effects. Most side effects will go away when treatment is over. Each person’s reaction to chemotherapy is different. Some people have very few side effects, while others may experience more. The most common side effects of pemetrexed and cisplatin are described on pages 46–49.
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Surgery for peritoneal mesothelioma Surgery is only suitable for a small number of people with peritoneal mesothelioma. The mesothelioma needs to be at a very early stage and you need to be very fit. If surgery is suitable for you, your surgeon will remove your peritoneum (peritonectomy). When your surgeon has removed all or most of the tumour you may have a heated chemotherapy drug put into your tummy. This is called hyperthermic intraperitoneal chemotherapy. The operation will be done by a specialist abdominal surgeon who is experienced in the treatment of peritoneal disease. You will need to travel to a specialist centre for this surgery. If your doctors offer you surgery, they will give you more information about what to expect.
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Other treatments (supportive therapies) For most people with mesothelioma, the main aim of treatment is to control symptoms. There are a number of drug treatments and other procedures that can be used to control the symptoms of both pleural and peritoneal mesothelioma. There are several people who can help you manage your symptoms, including your: •• hospital consultant •• nurse specialist •• GP. They may suggest referring you to a palliative care team. These teams specialise in managing symptoms and also provide emotional support for you and your family. Many palliative care teams have nurse specialists who can visit you at home (see page 105).
Treatments to control symptoms of pleural mesothelioma Breathlessness
Breathlessness is a common symptom of pleural mesothelioma. It’s often caused by a build-up of the fluid between the two layers of the pleura (the membranes that cover the lungs). This is called a pleural effusion.
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Treating a pleural effusion A pleural effusion is treated by placing a small tube between the two layers of the pleura and draining off the fluid. The tube is usually put in the side of your chest. You will have a local anaesthetic to numb the area. When the tube is in place it will usually be connected to a bag or a bottle for the fluid to drain into. You may need to have the fluid removed on a regular basis. After the fluid from the pleural effusion has been drained, it may be possible to seal the two layers of the pleura together to prevent the fluid building up again. This is called pleurodesis. Your doctor can put sterile talcum powder (talc), or a particular chemical powder, into the pleural space through the tube. This causes the membranes to stick together and helps stop pleural effusions happening again. A pleurodesis may sometimes be done during a video-assisted thoracoscopy (see page 26). Your doctor will be able to tell you about this. Some people may have a soft flexible tube (pleural catheter) put in, particularly if they’re unable to have pleurodesis. The tube can be tunnelled under the skin and inserted into the space where fluid collects. It can be left in position so that any fluid can be drained off whenever needed without you having a tube put in each time. The end of the tube is covered with a dressing when you’re not using it. You may have a catheter put in as a day-case procedure or you may need to stay in hospital for a few days. You can be taught how to drain the fluid yourself or the hospital staff can arrange for a district nurse to do this. We have more detailed information on managing a pleural effusion, which we can send you.
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A pleural effusion
Rib Outer pleura Pleural cavity Inner pleura Pleural effusion
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Other ways to manage breathlessness
These include breathing techniques, relaxation and coping strategies. These can all help to reduce the distress of breathlessness and make your breathing easier. Even simple measures, such as how you position yourself when sitting or standing, can be helpful. Using a fan or sitting by an open window with cool air blowing on to your face may also help ease breathlessness. Your doctor may also prescribe medicines to help with breathlessness, such as a low dose of the painkiller morphine, or drugs to help relieve the anxiety and panic that breathlessness can cause. Some people may benefit from using oxygen at home. Your doctor or palliative care nurse can organise for you to have oxygen at home if it’s suitable for you. We have more detailed information in our booklet Managing breathlessness. We can send you a copy.
Cough
Coughing is also a common symptom of mesothelioma. This can be difficult to cope with as it can sometimes cause other symptoms such as pain, vomiting and tiredness. Your doctor may be able to give you medicines to help. You may also find it helpful to: •• Avoid things that seem to aggravate your cough – these will vary from person to person. •• Use steam inhalations or saline nebulisers. A nebuliser is a small machine that turns saline into a fine mist, so you can breathe it deep into your lungs. •• Sleep in a different position – maybe propped up with pillows.
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Treatments to control symptoms of peritoneal mesothelioma Peritoneal mesothelioma can cause a build-up of fluid in the tummy (abdomen) known as ascites. Your tummy becomes swollen and you may have pain, and feel sick and breathless.
Treating ascites
Ascites can be treated by draining off the fluid from your tummy. This helps to relieve the symptoms. You will be given a local anaesthetic injection in your tummy to numb the area. A small cut is made in the skin and a thin tube is inserted. The tube is attached to a drainage bag and the fluid slowly drains out. The tube may be held in place with a couple of stitches and covered with a dressing. The length of time that the tube needs to stay in place depends on the amount of fluid that needs to be drained off. Sometimes, a small amount of fluid can be drained in the outpatients clinic. But if there is a large amount of fluid, the procedure may need to be carried out in hospital under the supervision of the doctors and nurses. The drain may stay in place for up to 24 hours, although occasionally it may stay in longer. It’s possible for the fluid to build up again, and you may need the fluid drained off more than once. If the fluid builds up again quickly, your doctor may put a tube into your tummy which can be left in place. When the fluid starts to build up it can be attached to a drainage bottle and drained off. The end of the tube is covered with a dressing when you’re not using it. Your doctor will be able to give you more information about this.
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Side view of the abdomen showing draining of ascites
Peritoneum
Bowel
Ascites Womb 500 450 400 350 300 250 200 150
Bladder Rectum (back passage)
100 50
Your doctor may also prescribe a tablet called spironolactone. This is a water tablet (diuretic), which makes you pass urine more often. This may help stop the build-up of fluid in the abdomen. We have more detailed information about ascites, which we can send you.
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Managing bowel obstruction
Occasionally, peritoneal mesothelioma may cause the bowel to block. Symptoms may include pain, tummy bloating, sickness and constipation. If this happens, your doctors will give you medicines to control your symptoms. They may also suggest treatments that will help rest your bowel for a while and help with the blockage.
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Treatments to control other symptoms of mesothelioma Pain Pain is a common symptom of mesothelioma. Let your doctors or specialist nurse know if you have pain so that they can assess and treat it early on.
Painkillers
There are many painkilling drugs available to treat different types and levels of pain. They include: painkillers, such as paracetamol, codeine or morphine; and anti-inflammatory drugs, such as ibuprofen (Brufen®) and diclofenac (Voltarol®). Some people find that they have nerve pain (also known as neuropathic pain), which happens when the mesothelioma presses on nerves. This type of pain is best treated with specific painkillers that treat nerve pain such as gabapentin and pregabalin (Lyrica®). Often, a combination of painkillers is needed to get the best pain control.
Other ways to control pain
Other general ways of relaxing and helping to reduce your pain include: •• listening to relaxation CDs •• having a long soak in a warm bath •• having a massage to an area of your body that isn’t painful, such as your hand or foot.
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Occasionally, if your pain is troublesome, your doctor or nurse may suggest a short admission to hospital or a hospice so that your pain can be controlled while you’re an inpatient. They may also suggest referring you to a doctor who specialises in pain control, or a specialist pain clinic. They may use other methods of pain control, such as specialised procedures to block nerves, if nerve pain is a problem. We have a booklet called Controlling cancer pain, which we can send you.
Night sweats Mesothelioma can cause some people to sweat a lot at night. This can be distressing, especially if you wake at night with damp bed clothes and bedding. Let your doctor know if this happens to you as they may be able to give you medicines to help. You may also find the following tips helpful: •• Try avoiding drinks that contain caffeine before you go to bed or in the night. •• Keep the room temperature cool or use a fan. •• Avoid using duvets or blankets that make you too hot. •• Lie on a towel so that you avoid getting your bedding damp. •• Use cotton sheets and bed clothes, and have some spare so that you can change them in the night if you need to.
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Loss of appetite Mesothelioma and some cancer treatments can cause problems with eating and digestion. If your appetite is poor, try having smaller, more frequent meals. You can also add high-protein powders to your normal food. Or you can replace meals with nutritious, high-calorie drinks. These are available from most chemists and can be prescribed by your GP. If you have lost your appetite, medicines such as steroids may help improve it. You can also ask to be referred to a dietitian at your hospital. They can advise you which foods are best for you and also whether any food supplements would help you. If you’re at home, your GP can arrange this for you. Our booklet Eating problems and cancer has more information.
Tiredness Many people with mesothelioma feel tired and have less energy to do the things they normally do. This may be due to the illness or it may be a side effect of treatment. It’s important not to do too much. Your body will tell you when you need to rest, but it’s important not to stop doing things completely. Try to balance rest with gentle activity, such as walking. Some people find it helpful to set goals to help them plan their daily activities. These goals may include cooking a light meal, going for a short walk or meeting a friend.
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Some causes of tiredness can be treated, for example anaemia (low red blood cells) can be treated with a blood transfusion. Your doctor can take a blood sample from you to find out if you have anaemia. If sleep problems are causing or contributing to your tiredness, then improving your sleep will help you feel better. You can read about ways of improving your sleep in our information about difficulty sleeping. Tiredness is also a common symptom of depression. If you think you’re depressed, talk to your doctor or nurse. You and your doctor will be able to work out if what you’re feeling is depression or fatigue. Talking about your feelings with a professional counsellor can often help depression. Antidepressants may also help you feel better. Our booklet Coping with fatigue has more information.
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Complementary therapies Some people find that complementary therapies, such as acupuncture, massage, aromatherapy and relaxation techniques, can help them feel better and reduce symptoms. Many hospitals and hospices offer these therapies. If you’d like to try a complementary therapy, check with your cancer specialist or GP before using it. This is important because some complementary therapies should be avoided during, and for a short time after, cancer treatments. We can send you our booklet about cancer and complementary therapies.
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Research – clinical trials 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. These 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 treatment is better than what is already available. Our booklet Understanding cancer research trials (clinical trials) describes clinical trials in more detail. We can send you a copy.
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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 to not 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.
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Blood and tumour samples Blood 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 are 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.
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
Af ter treatment Follow-up76 Rehabilitation and recovery
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Share your experience
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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, friends or one of the organisations on page 119–124 during this time.
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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.
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
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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 on 0808 808 00 00 or visit our website macmillan.org.uk/cancervoices for more information.
‘I spoke to a Macmillan Nurse in detail about Dad’s condition. I asked about support groups and other sufferers and what to expect with chemo and all those other questions we all think we’ll never have to ask. I will forever be grateful for the time she took to talk to me’. Emmeline
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
Financial help and work Financial help
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Work94 Insurance95
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Financial help 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). Ideally you should seek the advice of a specialist solicitor who is experienced in mesothelioma and can advise you on obtaining benefits and compensation. You can get a list of accredited specialist solicitors from The Association of Personal Injury Lawyers (see page 119).
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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 or your solicitor 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. You can get information about support groups from Asbestos Victims Support Group Forum UK (see page 119) or Mesothelioma UK (see page 120).
Personal Independence Payment/Disability Living Allowance or Attendance Allowance
These benefits are for people who have difficulty walking or looking after themselves. Personal Independence Payment (PIP) is for people aged 16–64. As part of the welfare reforms, PIP has replaced Disability Living Allowance (DLA) for everyone making a new claim in England, Scotland and Wales. If you live in Northern Ireland, people aged under 65 can currently claim DLA. But there are plans to introduce PIP in Northern Ireland eventually. You’ll need to check with your benefits adviser which of these benefits to claim. In all countries in the UK, Attendance Allowance (AA) is for people over the age of 65. If you are terminally ill you may be able to apply for PIP/DLA 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.
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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 undertake some work. There are two types of ESA: contribution-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. In England, Scotland and Wales, income-related Employment and Support Allowance is gradually being replaced by a new benefit called Universal Credit. Contributory-based Employment and Support Allowance is staying the same. The benefit you have to apply for will depend on where you live. Contact a welfare rights adviser to find out how these changes may affect you.
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Industrial Injuries Disablement Benefit
This is an important benefit that’s payable to people with certain asbestos-related illnesses, including mesothelioma. It isn’t means-tested and is 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. Industrial Injuries Disablement Benefit can be paid weekly, every four weeks or every 13 weeks directly into your bank account. The amount you get will depend on how much your illness affects you. If you’re awarded Industrial Injuries Disablement Benefit, you may also be entitled to further benefits. You’ll be able to get further information about these from a benefits adviser or specialist solicitor.
Lump sum payments
You may be able to get a one-off lump sum payment. There are different types of payment, and which ones you can apply for depends on what other benefits you’re entitled to. Before you apply for a lump sum payment you should speak to a solicitor who specialises in mesothelioma claims (see page 89). They can guide you to the most appropriate scheme for your situation.
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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 is still worth pursuing a claim for this benefit. This is because you may receive a payment within weeks of making the application. You must claim within one year of the award for Industrial Injuries Disablement Benefit being made. Diffuse mesothelioma payments (2008 scheme) 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.
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
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Diffuse Mesothelioma Payment Scheme (DMPS) Before you apply for a payment under this scheme you should speak to a solicitor who specialises in mesothelioma claims (see next page). This payment is for people who were diagnosed with mesothelioma on or after 25 July 2012. It is only for people who were exposed to asbestos at work, but who are unable to trace the employer, or the employer’s liability insurer. The scheme can also pay out to eligible relatives or dependants of a person who has died from mesothelioma. You can still claim under this scheme even if you have already claimed under the 2008 scheme or the Pneumoconiosis etc (Workers’ Compensation) Act 1979. If you already have a payment from one of these schemes, it will be deducted from any DMPS payment you get. Even if you have not been successful in claiming under other schemes, you may still be eligible for the DMPS scheme. For more information about the 2008 scheme and the DMPS, visit gov.uk/diffuse-mesothelioma-payment
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 your local Veterans Advisory & Pensions Committee (call 0808 1914 218). You can also call the Veterans UK helpline on the same number for more information.
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Compensation from employers 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, specialist solicitor. When looking for a solicitor, it’s important to look for one from a specialist team 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 on page 90. Don’t be afraid to ask them to go over anything that you haven’t understood or to ask for more information. There are several ways you can find a specialist solicitor: •• you can ask your specialist nurse or consultant if they have a list of specialist solicitors. •• The Association of Personal Injury Lawyers (see page 119) has a list of accredited specialist lawyers. •• 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. Visit mesothelioma.uk.com or call their freephone helpline on 0800 169 2409.
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Questions to ask •• Is the solicitor a Fellow of the Association of Personal Injury Lawyers (APIL)? •• 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? •• Will the solicitor provide you with a free initial consultation? •• Will they 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 they 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 upfront? •• 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?
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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 the 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.
‘As soon as I was diagnosed with mesothelioma, the lung cancer nurses and the doctors I was seeing all said that I should be looking into claiming compensation. Because mesothelioma is generally only caused by exposure to asbestos.’ George
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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. Sometimes this time limit can be extended so do seek advice. 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, it is often possible to trace an employer.
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.
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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 important to get legal advice from a specialist solicitor on how to make a claim.
‘My solicitor’s a specialist in industrial disease claims, he’s very understanding. He knows that he can’t talk to me for too long because I get tired. Generally he’s just presenting things for me to approve and sign. We’ve done a lot of that by email, which has made it easy and the claim has been going really well.’ Liam
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Work You may need to take time off work during your treatment and for a while afterwards. It can be hard to judge the best time to go back to work, and this will depend mainly on the type of work you do and how much your income is affected. It’s important to do what’s right for you. It can be helpful to talk to your employer about the situation – it may be possible for you to work part-time or job share. Some people may wish to take early retirement on health grounds. Our booklet Work and cancer discusses work‑related financial issues. We can send you a copy. You may also find it helpful to read the section on financial help (see pages 82–83).
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Insurance After having cancer treatment, it can be more difficult to get certain types of insurance, including life and travel insurance. An independent financial adviser (IFA) can help you assess your financial needs and find the best deal for you. You can find an IFA through one of the organisations listed on pages 122–123.
Our booklets Getting travel insurance and Insurance may be helpful.
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
Work 97
Your feelings and relationships Your feelings What you can do
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Your feelings Most people feel overwhelmed when they are told they have cancer and experience many different emotions. These are part of the process that people go through while dealing with their illness. Partners, family members and friends often have similar feelings and may also need support and guidance to cope. Reactions differ from one person to another – there is no right or wrong way to feel. We describe some of the common emotional effects here. However, reactions vary and people have different emotions at different times.
Shock and disbelief Disbelief is often the immediate reaction when cancer is diagnosed. You may feel numb and unable to express any emotion. You may also find that you can only take in a small amount of information, and so you have to keep asking the same questions again and again. This need for repetition is a common reaction to shock. Some people find that their feelings of disbelief make it difficult for them to talk about their illness with family and friends. For others it may be the main topic of conversation as it’s the main thing on their mind.
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Fear and uncertainty Cancer is a frightening word surrounded by fears and myths. One of the greatest fears people have is whether they will die. Many people are anxious about whether their treatment will work and have any side effects. It’s best to discuss your treatment and possible outcomes in detail with your doctor. You may find that doctors can’t answer your questions fully, or that their answers sound vague. It’s often impossible for them to say for certain how effective treatment will be. Doctors know roughly how many people may benefit from a certain treatment, but they can’t predict the future for a particular person. Many people find this uncertainty hard to live with, but your fears may be worse than the reality. Finding out about your illness can be reassuring. Discussing what you have found out with your family and friends can also help. You might find it helpful to talk to other people in your situation. Call our cancer support specialists on 0808 808 00 00 to find out if there’s a support group in your area. Or you can visit our online community at macmillan.org.uk/community to chat any time with people who know what you’re going through. Some people find some form of spiritual support helpful at this time, and you may like to talk to a spiritual or religious adviser.
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Denial Many people cope with their illness by not wanting to know much or talk much about it. If that’s the way you feel, just let your family and friends know that you’d prefer not to talk about your illness, at least for the time being. Sometimes, however, it’s the other way around. You may find that your family and friends don’t want to talk about your illness. They may appear to ignore the fact that you have cancer, perhaps by playing down your worries and symptoms or deliberately changing the subject. If this upsets or hurts you, try telling them. Perhaps start by reassuring them that you know why they’re doing it, but that it will help you if you can talk to them about your illness.
Anger People often feel very angry about their illness. Anger can also hide other feelings, such as fear or sadness. You may direct your anger at the people closest to you, or at the doctors and nurses caring for you. It’s understandable that you may be very upset by many aspects of your illness, so you don’t need to feel guilty about your angry thoughts or irritable moods. Bear in mind that your family and friends may sometimes think that your anger is directed at them, when it’s really directed at your illness. It may help to tell them this, or perhaps show them this section of the booklet.
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Isolation and depression There may be times when you want to be left alone to work through your thoughts and emotions. This can be hard for your family and friends, who want to share this difficult time with you. It may help them cope if you reassure them that, although you don’t feel like discussing your illness at the moment, you’ll talk to them about it when you’re ready. Sometimes, depression can stop you wanting to talk. If you or your family think you may be depressed, discuss this with your GP. They can refer you to a doctor or counsellor who specialises in the emotional problems of people with cancer, or prescribe an antidepressant drug for you. We have a video at macmillan.org.uk/depression that you may find helpful. Our booklet The emotional effects of cancer discusses the feelings you may experience and has advice on how to cope with them.
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Talking to children Deciding what to tell your children or grandchildren about your cancer is difficult. An open, honest approach is usually best. Even very young children can sense when something is wrong, and their fears can sometimes be worse than the reality. How much you tell your children will depend on their age and how mature they are. It may be best to start by giving only small amounts of information, and gradually tell them more to build up a picture of your illness.
Teenagers
Teenagers can have an especially hard time. At a stage when they want more freedom, they may be asked to take on new responsibilities and they may feel over-burdened. It’s important that they can go on with their normal lives as much as possible and still get the support they need. If they find it hard to talk to you, you could encourage them to talk to someone close who can support and listen to them, such as a grandparent, family friend, teacher or counsellor. They may also find it useful to look at the website riprap.org.uk which has been developed especially for teenagers who have a parent with cancer. Our booklet Talking to children when an adult has cancer includes discussion about sensitive topics. There’s also a video on our website that may help, at macmillan.org.uk/talkingtochildren
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What you can do One of the hardest things to cope with can be the feeling that the cancer and its treatment have taken over your life. This is a common feeling, but there are lots of things you can do. There may be days when you feel too tired to even think about what could help. You’ll have good and bad days, but if you’re overwhelmed by these feelings, let your doctor or nurse know. It may be that you have depression, and this is treatable so they should be able to help.
Finding ways to cope You may find it helps to try to carry on with life as normally as possible, by staying in contact with friends and keeping up your usual activities. Or you may want to decide on new priorities in your life. This could mean spending more time with family, going on the holiday you’ve dreamed about or taking up a new hobby. Just thinking about these things and making plans can help you realise that you still have choices. Some people want to improve their general health by eating a more healthy diet, by getting fitter or by finding a relaxing complementary therapy. Understanding about the cancer and its treatment helps many people cope. It means they can discuss plans for treatment, tests and check-ups with their doctors and nurses. Being involved in these choices can help give you back control of your life.
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Who can help? Many people are available to help you and your family. District nurses work closely with GPs and make regular visits to patients and their families at home if needed. The hospital social worker can give you information about social services and benefits you may be able to claim, such as meals on wheels, a home helper or hospital fares. The social worker may also be able to arrange childcare for you during and after treatment.
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In many areas of the country, there are also specialist nurses called palliative care nurses. They are experienced in assessing and treating symptoms of advanced cancer. Palliative care nurses are sometimes known as Macmillan nurses. However, many Macmillan professionals are nurses who have specialist knowledge in a particular type of cancer. You may meet them when you’re at a clinic or in hospital. Marie Curie nurses help care for people approaching the end of their lives in their own homes. Your GP or hospital specialist nurse can usually arrange a visit by a palliative care or Marie Curie nurse. There’s also specialist help available to help you cope with the emotional impact of cancer and its treatment. You can ask your hospital doctor or GP to refer you to a doctor or counsellor who specialises in supporting people with cancer and their families. Mesothelioma UK provide specialist information and support to people with mesothelioma. You can contact them on freephone helpline 0800 169 2409. Our cancer support specialists on 0808 808 00 00 can tell you more about counselling and can let you know about services in your area.
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
Information for carers Looking after yourself
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Talking about cancer
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Financial help
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Coroner’s inquest
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Looking after yourself If you’re a relative or friend of someone who has mesothelioma you may be involved in caring for them. You may help with their everyday needs, such as cooking meals, helping around the house or helping them with washing and bathing if they need it. While you may be very happy to do this, there may come a time when you would benefit from some extra support. There are a number of health and social care professionals who can provide support for both you and your relative. Let your GP or nurse know if you need extra support. Caring for someone you love can be physically and emotionally hard work. If you’ve been looking after them for some time you may start to feel drained. Let your GP or nurse know so that they can make sure that you and your relative get the support you need. It’s important to look after yourself. Remember that having some support and help can allow you to regain your previous role of being a partner, friend, son or daughter.
You may find our booklet Looking after someone with cancer helpful. It’s based on carers’ experiences and has lots of practical tips and information.
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Talking about cancer As a relative or friend you may find it hard to talk about cancer or share your feelings. You might think it’s best to pretend everything is fine, and carry on as normal. You might not want to worry the person with cancer, or you might feel you’re letting them down if you admit to being afraid. Unfortunately, denying strong emotions can make it even harder to talk, and may lead to the person with cancer feeling very isolated. Partners, relatives and friends can help by listening carefully to what the person with cancer wants to say. It may be best not to rush into talking about the illness. Often it’s enough just to listen and let the person with cancer talk when they are ready. You may find some of the courses on our Learn Zone website helpful. There are courses to help with listening and talking, to help friends and family support their loved ones affected by cancer. Visit macmillan.org.uk/learnzone to find out more.
Our booklet Lost for words – how to talk to someone with cancer has more suggestions if you have a friend or relative with cancer.
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Financial help We have more information about supporting someone with cancer at macmillan.org.uk/carers If you’re a carer, you may be entitled to financial help, such as the Carer’s Allowance. You can get more information about this benefit and any others that you may be entitled to by calling the Benefit Enquiry Line fee on 0800 882 200. You can also speak to one of our Welfare Advisers by calling 0808 808 00 00. We have more information about caring for someone with advanced cancer and the professionals that can help.
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Coroner’s inquest There may come a time when treatments are no longer working for your relative or friend and you have to prepare for their death. At such a difficult time, it can be even harder if you don’t already know that when someone dies of mesothelioma, there will need to be an inquest. This is a legal investigation into the circumstances surrounding a person’s death. An inquest is needed because mesothelioma is an occupational disease. When a person with mesothelioma dies, the doctor who signs the death certificate must inform the Coroner (the procurator fiscal in Scotland) who will carry out the inquest. The need for an inquest will usually mean that there is a short delay before your relative or friend’s funeral can take place. The Coroner will issue an interim death certificate in most cases. This is because a full certificate cannot be issued until after the inquest is completed and that may take some months. The coroner will decide if a post-mortem is needed to find out whether the death was due to mesothelioma or some other cause. In many situations, a post-mortem isn’t needed if there’s enough medical evidence to confirm the person had mesothelioma. This evidence may come from biopsies that were taken when the person was first diagnosed with mesothelioma. It can be distressing when you have to deal with these issues as well as the possible death of your relative or friend. You may wish to get support from your specialist nurse or one of the support organisations at the back of this booklet. You can also call the Macmillan Support Line free on 0808 808 00 00.
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’ Adrienne
Further information About our information
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Other ways we can help you
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Other useful organisations
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Your notes and questions
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About our information We provide expert, up-to-date information about cancer. And all our information is free for everyone. Order what you need
Other formats
You may want to order more leaflets or booklets like this one. Visit be.macmillan.org. uk or call us on 0808 808 00 00.
We also provide information in different languages and formats, including:
We have booklets on different cancer types, treatments and side effects. We also have information about work, financial issues, diet, life after cancer and information for carers, family and friends.
•• British Sign Language
All of our information is also available online at macmillan. org.uk/cancerinformation There you’ll also find videos featuring real-life stories from people affected by cancer, and information from health and social care professionals.
•• audiobooks •• Braille •• Easy Read booklets •• large print •• translations. Find out more at macmillan. org.uk/otherformats If you’d like us to produce information in a different format for you, email us at cancerinformationteam@ macmillan.org.uk or call us on 0808 808 00 00.
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Help us improve our information We know that the people who use our information are the real experts. That’s why we always involve them in our work. If you’ve been affected by cancer, you can help us improve our information. We give you the chance to comment on a variety of information including booklets, leaflets and fact sheets.
If you’d like to hear more about becoming a reviewer, email reviewing@macmillan. org.uk You can get involved from home whenever you like, and we don’t ask for any special skills – just an interest in our cancer information.
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Other ways we can help you At Macmillan, we know how a cancer diagnosis can affect everything, and we’re here to support you. No one should face cancer alone. Talk to us If you or someone you know is affected by cancer, talking about how you feel and sharing your concerns can really help. Macmillan Support Line Our free, confidential phone line is open Monday–Friday, 9am–8pm. Our cancer support specialists can: •• help with any medical questions you have about your cancer or treatment •• help you access benefits and give you financial advice •• be there to listen if you need someone to talk to •• tell you about services that can help you in your area.
Call us on 0808 808 00 00 or email us via our website, macmillan.org.uk/talktous Information centres Our information and support centres are based in hospitals, libraries and mobile centres. There, you can speak with someone face to face. Visit one to get the information you need, or if you’d like a private chat, most centres have a room where you can speak with someone alone and in confidence. Find your nearest centre at macmillan.org.uk/ informationcentres or call us on 0808 808 00 00.
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Talk to others
Online community Thousands of people use our No one knows more about the online community to make impact cancer can have on your friends, blog about their life than those who have been experiences and join groups through it themselves. That’s to meet other people going why we help to bring people through the same things. together in their communities You can access it any time and online. of day or night. Share your experiences, ask questions, Support groups or just read through people’s Whether you are someone posts at macmillan.org.uk/ living with cancer or a carer, community we can help you find support The Macmillan in your local area, so you healthcare team can speak face to face with people who understand. Our nurses, doctors and Find out about support groups other health and social care in your area by calling us or professionals give expert care by visiting macmillan.org.uk/ and support to individuals and selfhelpandsupport their families. Call us or ask your GP, consultant, district nurse or hospital ward sister if there are any Macmillan professionals near you. ‘Everyone is so supportive on the online community, they know exactly what you’re going through. It can be fun too. It’s not all just chats about cancer.’ Mal
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Help with money worries Having cancer can bring extra costs such as hospital parking, travel fares and higher heating bills. If you’ve been affected in this way, we can help. Financial advice Our financial guidance team can give you advice on mortgages, pensions, insurance, borrowing and savings. Help accessing benefits Our benefits advisers can offer advice and information on benefits, tax credits, grants and loans. They can help you work out what financial help you could be entitled to. They can also help you complete your forms and apply for benefits. Macmillan Grants Macmillan offers one-off payments to people with cancer. A grant can be for anything from heating bills or extra clothing to a much-needed break.
Call us on 0808 808 00 00 to speak to a financial guide or benefits adviser, or to find out more about Macmillan Grants. We can also tell you about benefits advisers in your area. Visit macmillan.org.uk/ financialsupport to find out more about how we can help you with your finances.
Help with work and cancer Whether you’re an employee, a carer, an employer or are self-employed, we can provide support and information to help you manage cancer at work. Visit macmillan.org.uk/work Macmillan’s My Organiser app This free mobile app can help you manage your treatment, from appointment times and contact details, to reminders for when to take your medication. Search ‘My Organiser’ on the Apple App Store or Google Play on your phone.
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Other useful organisations There are lots of other organisations that can give you information or support. Mesothelioma support organisations
British Lung Foundation 73–75 Goswell Road, London EC1V 7ER Asbestos Victims Support Helpline 03000 030 555 Group Forum UK (Mon–Fri, 10am–5pm) 38 Digbeth, Birmingham, Email
[email protected] B5 6DR www.blf.org.uk Tel 0121 678 8883 Supports people affected by www.asbestosforum.org.uk any type of lung disease. Organisation representing Runs Breathe Easy support asbestos victims support groups – a network of over groups. You can find your local 230 groups across the country support group by looking under providing support and forum members on the website. information to people with lung diseases. Association of Personal Injury Lawyers (APIL) June Hancock Mesothelioma 3 Alder Court, Research Fund Rennie Hogg Road, Riverside East, Nottingham NG2 1RX 2 Millsands, Tel 0115 958 0585 Sheffield S3 8DT Email
[email protected] Tel 0114 274 4420 www.apil.org.uk Email Helps find lawyers for people
[email protected] who are seeking compensation. www.junehancockfund.org Raises funds for research into mesothelioma.
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Mesothelioma UK Glenfield Hospital, Groby Road, Leicester LE3 9QP Helpline 0800 169 2409 (Mon–Fri, 8.30am–4.30pm) Email mesothelioma.uk @uhl-tr.nhs.uk www.mesothelioma.uk.com A national organisation providing up-to-date information for patients with mesothelioma and their carers via its helpline. Gives information on treatment, financial help, support services and support groups.
Provides information and support to sufferers and their families. Fundraises for research into the disease through the British Lung Foundation.
Veterans-UK Ministry of Defence, Norcross, Thornton Cleveleys FY5 3WP Helpline 0808 1914 218 Email
[email protected] www.gov.uk/government/ organisations/veterans-uk Aim to improve personnel, pensions, welfare and support services to members of the Mick Knighton Mesothelioma armed forces and veterans. Research Fund (is now General cancer part of the British Lung support organisations Foundation) c/o British Lung Foundation, Cancer Black Care Sir GB Hunter Memorial 79 Acton Lane, Hospital, The Green, London NW10 8UT Wallsend NE28 7PB Tel 020 8961 4151 Helpline 03000 030 555 Email (Mon–Fri, 10am–5pm)
[email protected] www.blf.org.uk/Page/ www.cancerblackcare.org.uk MKMRF-Mick-KnightonOffers information and support Mesothelioma-Researchfor people with cancer from Fund ethnic communities, their friends, carers and families.
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Cancer Focus Northern Ireland 40–44 Eglantine Avenue, Belfast BT9 6DX Tel 0800 783 3339 (Mon–Fri, 9am–1pm) Email
[email protected] www.cancerfocusni.org Cancer Support Scotland The Calman Centre, 75 Shelley Road, Glasgow G12 0ZE Tel 0800 652 4531 Email info@ cancersupportscotland.org www.cancersupport scotland.org Macmillan Cancer Voices www.macmillan.org.uk/ cancervoices A UK-wide network that enables people who have or have had cancer, and those close to them such as family and carers, to speak out about their experience of cancer.
Maggie’s Centres 2nd Floor Palace Wharf, Rainville Road, London W6 9HN Tel 0300 123 1801 Email enquiries@ maggiescentres.org www.maggiescentres.org Provides information about cancer, benefits advice, and emotional or psychological support. Tenovus Head Office, Gleider House, Ty Glas Road, Cardiff CF14 5BD Tel 0808 808 1010 (Mon–Sun, 8am–8pm) www.tenovus.org.uk Aims to help everyone get equal access to cancer treatment and support. Funds research and provides support such as mobile cancer support units, a free helpline, an ‘Ask the nurse’ service on the website and benefits advice.
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Counselling and emotional support
Financial or legal advice and information
British Association for Counselling and Psychotherapy (BACP) BACP House, 15 St John’s Business Park, Lutterworth, Leicestershire LE17 4HB Tel 01455 883 300 Email
[email protected] www.bacp.co.uk Promotes awareness of counselling and signposts people to appropriate services. You can search for a qualified counsellor at itsgoodtotalk.org.uk
Benefit Enquiry Line Northern Ireland Tel 0800 220 674 (Mon–Wed and Fri, 9am–5pm, Thu, 10am–5pm) Textphone 0800 243 787 www.nidirect.gov.uk/moneytax-and-bfits Provides information and advice about disability benefits and carers’ benefits.
Samaritans Freepost RSRB-KKBY-CYJK, Chris, PO Box 9090, Stirling FK8 2SA Tel 08457 90 90 90 Email
[email protected] www.samaritans.org Provides confidential and non-judgemental emotional support, 24 hours a day, 365 days a year, for people experiencing feelings of distress or despair.
Citizens Advice Provides advice on a variety of issues including financial, legal, housing and employment issues. Find details for your local office in the phone book or on one of these websites: England and Wales www.citizensadvice.org.uk Scotland www.cas.org.uk Northern Ireland www.citizensadvice.co.uk You can also find advice online in a range of languages at adviceguide.org.uk
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Civil Legal Advice Tel 0845 345 43 45 (Mon–Fri, 9am–8pm, Sat, 9am–12.30pm) Minicom 0345 609 6677 www.gov.uk/ civil-legal-advice Has a list of legal advice centres in England and Wales and solicitors that take legal aid cases. Offers a free translation service if English isn’t your first language. Department for Work and Pensions (DWP) Disability Living Allowance Helpline 0345 712 3456 Textphone 0345 722 4433 Personal Independence Payment Helpline 0345 850 3322 Textphone 0345 601 6677 Carer’s Allowance Unit 0345 608 4321 Textphone 0345 604 5312 www.gov.uk/browse/ benefits Manages state benefits in England, Scotland and Wales. You can apply for benefits and find information online or through its helplines.
GOV.UK www.gov.uk Has comprehensive information about social security benefits and public services.
Support for carers Carers Trust (Princess Royal Trust for Carers in Scotland) 32–36 Loman Street, London SE1 0EH Tel (England) 0844 800 4361 Tel (Scotland) 0300 123 2008 Tel (Wales) 0292 009 0087 Email
[email protected] www.carers.org and www.youngcarers.net Provides support, information, advice and services for people caring at home for a family member or friend. You can find details for UK offices and search for local support on the website.
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Carers UK Tel (England, Scotland, Wales) 0808 808 7777 Tel (Northern Ireland) 028 9043 9843 (Wed–Thu, 10am–12pm and 2–4pm) Email
[email protected] www.carersuk.org Offers information and support to carers across the UK. Can put people in contact with support groups for carers in their area.
Advanced cancer and end-of-life care Help the Hospices Hospice House, 34–44 Britannia Street, London WC1X 9JG Tel 020 7520 8200 Email
[email protected] www.helpthehospices.org.uk Provides information about living with advanced illness. Has a directory of hospice services and practical booklets available free from the website.
Marie Curie 89 Albert Embankment, London SE1 7TP Tel 0800 716 146 (Mon–Fri, 9am–5pm) Email supporter.relation@ mariecurie.org.uk www.mariecurie.org.uk Marie Curie nurses provide free end-of-life care to people in their own homes, or in Marie Curie hospices, 24 hours a day, 365 days a year.
Bereavement support Cruse Bereavement Care PO Box 800, Richmond TW9 1RG Tel 0844 477 9400 (Mon–Fri, 9.30am–5pm) Email
[email protected] www.crusebereavement care.org.uk Has a UK-wide network of branches that provide bereavement support to anyone who needs it. You can find your local branch on the website, at www.cruse.org.uk/cruseareas-and-branches
Your notes and questions
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Disclaimer We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third‑party information or websites included or referred to in it. Some photographs are of models.
Thanks This booklet has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by our Senior Medical Editor, Dr David Gilligan, Consultant Oncologist and our Chief Medical Editor, Dr Tim Iveson, Macmillan Consultant Medical Oncologist. With thanks to Dr Neil Bayman, Consultant Clinical Oncologist; Mr Tom Cecil, Consultant Surgeon; Helen Childs, Partner, Personal Injury, Withy King; John Flanagan and representatives from Asbestos Victim Support; Anne Moylan, Lung Cancer and Mesothelioma Clinical Nurse Specialist, Portsmouth Hospital NHS Trust; Irwin Mitchell Solicitors; Dr Michael Peake, Consultant and Senior Lecturer in Respiratory Medicine; Dr Sanjay Popat, Consultant Medical Oncologist; Dr Robert Rintoul, Consultant Physician; Gerry Slade, Mesothelioma Clinical Nurse Specialist; Mr Tom Treasure, Consultant Surgeon; Mr David Waller, Consultant Thoracic Surgeon. Thanks also to the people affected by cancer who reviewed this booklet, and those who shared their stories.
Sources We’ve listed a sample of the sources used in this publication below. If you’d like further information about the sources we use, please contact us at
[email protected] Alexander HR, et al. Malignant peritoneal mesothelioma: Epidemiology, risk factors, clinical presentation, diagnosis and staging. UpToDate (accessed November 2014). Baratti D, et al. Cytoreductive surgery with selective versus complete parietal peritonectomy followed by hyperthermic intraperitoneal chemotherapy in patients with diffuse malignant peritoneal mesothelioma: A controlled study. Ann Surg Oncol. 2012. 19: 1416–1424. Caoa C, et al. A systematic review and meta-analysis of surgical treatments for malignant pleural mesothelioma. Lung Cancer. 2014. 83: 240–245. National Lung Cancer Audit Report 2014. Mesothelioma. Report for the period 2008–2012.
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More than one in three of us will get cancer. For most of us it will be the toughest fight we ever face. And the feelings of isolation and loneliness that so many people experience make it even harder. But you don’t have to go through it alone. The Macmillan team is with you every step of the way. We are the nurses and therapists helping you through treatment. The experts on the end of the phone. The advisers telling you which benefits you’re entitled to. The volunteers giving you a hand with the everyday things. The campaigners improving cancer care. The community there for you online, any time. The supporters who make it all possible. Together, we are all Macmillan Cancer Support. For cancer support every step of the way, call Macmillan on 0808 808 00 00 (Mon–Fri, 9am–8pm) or visit macmillan.org.uk Hard of hearing? Use textphone 0808 808 0121, or Text Relay. Non-English speaker? Interpreters available. Braille and large print versions on request. © Macmillan Cancer Support, April 2015. 8th edition. MAC11672. Next planned review 2017. Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Printed using sustainable material. Please recycle.
