JASCAP JEET ASSOCIATION FOR SUPPORT TO CANCER PATIENTS MUMBAI, INDIA

81 Mesothelioma JASCAP JEET ASSOCIATION FOR SUPPORT TO CANCER PATIENTS MUMBAI, INDIA

Macmillan Cancer Support, [2013].This publication is based on [Understanding Mesothelioma May 2013 7th. edition] published by Macmillan Cancer Support, 89 Albert Embankment, London SE1 7UQ, United Kingdom. Macmillan Cancer Support accepts no responsibility for the accuracy of this adaptation/translation, nor the context in which the adaptation/translation is published. This adaptation/translation is solely the responsibility of [JASCAP, c/o Abhay Bhagat & Co., Office No.4, "SHILPA", 7 th Road, Prabhat Colony, Santacruz (East), Mumbai 400 055]. Publisher: JASCAP, Mumbai 400 055 Printer: JASCAP, Mumbai 400 055 Edition: February 2014

Contents About this booklet What is cancer? The lymphatic system Mesothelioma Risk factors and causes Symptoms How mesothelioma is diagnosed Staging Treating mesothelioma Treatment for pleural mesothelioma Treatment for peritoneal mesothelioma Other treatments (supportive therapies) to control symptoms of mesothelioma After treatment follow-up Research clinical trials Your feelings Talking to children What you can do Information for carers

1 About this booklet This booklet is about a type of cancer called mesothelioma. It contains information about the diagnosis and treatment of the two main types of mesothelioma: pleural and peritoneal mesothelioma. The treatment of each type is covered separately. We hope this booklet answers some of your questions about mesothelioma, 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. What is cancer? The organs and tissues of the body are made up of tiny building blocks called cells. Cancer is a disease of these cells. Cancer isn t a single disease with a single cause and a single type of treatment. There are more than 200 different kinds of cancer, each with its own name and treatment. Although cells in different parts of the body may look different and work in different ways, most repair and reproduce themselves in the same way. Normally, cells divide in an orderly and controlled way. But if for some reason the process gets out of control, the cells carry on dividing, and develop into a lump called a tumour. Tumours can be either benign (non-cancerous) or malignant (cancerous). Doctors can tell whether a tumour is benign or malignant by removing a piece of tissue (biopsy) and examining a small sample of cells under a microscope. In a benign tumour, the cells do not spread to other parts of the body and so are not cancerous. However, they may carry on growing at the original site, and may cause a problem by pressing on surrounding organs. In a malignant tumour, the cancer cells have the ability to spread beyond the original area of the body. If the tumour is left untreated, it may spread into surrounding tissue. Sometimes cells break away from the original (primary) cancer. They may spread to other organs in the body through the bloodstream or lymphatic system. When the cancer cells reach a new area they may go on dividing and form a new tumour. This is known as a secondary cancer or a metastasis.

2 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 More than 2,500 people are diagnosed with mesothelioma in the UK each year. Mesothelioma is a tumour of the mesothelium. This is the 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. A cancer of the mesothelium is called a malignant mesothelioma. However, it s usually referred to simply as mesothelioma. There are other tumours of the mesothelium, such as adenomatoid tumours, benign cystic mesotheliomas and solitary fibrous tumours of the pleura. This booklet is about malignant mesothelioma.

3 There are two main types of malignant mesothelioma: pleural mesothelioma and peritoneal mesothelioma. Pleural mesothelioma is much more common than peritoneal mesothelioma. Around 9 out of 10 cases (90%) of mesothelioma develop in the pleura, compared with around 1 in 10 (10%) in the peritoneum. Ratio of pleural mesothelioma to peritoneal mesothelioma Pleural mesothelioma The pleura is the smooth outer lining (membrane) that covers each lung. It has two layers: the inner (visceral) layer, which is next to the lung, and the outer (parietal) layer, which lines the chest wall. The two layers of the pleura are usually in contact and slide over each other as we breathe. The layers produce fluid, which allows them to move smoothly over each other. When mesothelioma develops in the pleura (pleural mesothelioma), the delicate layers of the pleura thicken and may press inwards on the lung. Fluid may also collect between the two layers, which is known as a pleural effusion. Pleural mesothelioma can sometimes spread to the lymph nodes in the chest or above the collarbone, or elsewhere in the body.

4 Peritoneal mesothelioma The outer lining (membrane) that covers the organs in the abdomen is known as the peritoneum. The peritoneum helps protect the organs of the abdomen and keep them in place. It also has two layers: the inner (visceral) layer, which is next to the abdominal organs, and the outer (parietal) layer, which lines the abdominal wall.

5 Mesothelioma in the peritoneum is called peritoneal mesothelioma. It causes thickening of the peritoneum and a collection of fluid in the abdomen. The collection of fluid is called ascites and causes swelling of the tummy (abdomen). Rare types of mesothelioma Very rarely, a 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. Cell types of mesothelioma Pleural and peritoneal mesothelioma can also be grouped according to how the cells look under a microscope. There are three main types: epithelial this is the most common sarcomatoid (fibrous)

6 mixed (biphasic) this has both epithelial and sarcomatoid cells. Knowing the type of cell involved may give your doctors an idea of how well the disease will respond to treatment. Risk factors and causes Asbestos Asbestos is the most common cause of mesothelioma. Up to nine out of ten 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). 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 10 60 years, although the average is about 30 40 years after exposure. Pleural mesothelioma When asbestos is disturbed or damaged, it releases tiny fibres that 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 to settle in the outer lining of the lung (the pleura). Over many years they can cause 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. 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.

7 Other causes Occasionally, mesothelioma develops in people who have never 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, has also been linked to mesothelioma. Mesothelioma isn t infectious and can t be passed on to other people. It isn t caused by inherited faulty genes, so family members don t have an increased risk of developing it, unless they have also been exposed to asbestos. Symptoms Symptoms vary depending on whether the mesothelioma is in the pleura or peritoneum. They may include some of those listed below. Pleural mesothelioma shortness of breath heavy sweating (especially at night) fever chest pain that feels heavy and dull or aching weight loss loss of appetite a cough that doesn t go away, although this is unusual. A collection of fluid between the layers of the pleura (pleural effusion) may cause shortness of breath and chest pain. Peritoneal mesothelioma swelling in the tummy (abdomen) tummy pain loss of appetite weight loss feeling sick changes to your normal bowel pattern, such as constipation or diarrhoea. A collection of fluid in the abdomen (ascites) may cause swelling in the tummy, pain, sickness and loss of appetite. All of these symptoms can be caused by conditions other than mesothelioma or cancer. If you have symptoms, you should always get them checked by your doctor, particularly if they don t go away after a couple of weeks.

8 How mesothelioma is diagnosed Usually, you begin by seeing your family doctor (GP) who will examine you and may arrange for you to have some blood tests and x-rays. Your GP should urgently refer you for a chest x-ray if you have a history of asbestos exposure, and any of the following symptoms: chest pain difficulty breathing unexplained symptoms, such as shoulder pain, a cough or weight loss. Depending on the results of any tests and x-rays, your GP may refer you to hospital for further tests and for specialist advice and treatment. At the hospital, the specialist will ask you about your general health and any previous medical problems before they examine you. You may be asked questions about any possible exposure to asbestos in your past, such as during jobs you ve had or at places you ve worked. This is called your occupational history. You may also be asked if someone in your family, a parent for example, worked with asbestos. Don t worry if you can t remember all of the details at first. You can let your doctor know later about anything you remember. Tests for pleural mesothelioma Pleural mesothelioma often starts as tiny lumps (nodules) in the pleura, which may not show up on scans or x-rays until they re quite large. You may need to have a number of different tests before your doctors can make an accurate diagnosis. We describe some of these tests here. If you need other tests, your doctors will be able to give you information about them. Chest x-ray A chest x-ray checks for any abnormalities in your lungs, such as thickening of the pleura or fluid around the lungs. There can be other causes of these problems apart from mesothelioma. CT (computerised tomography) scan A CT scan takes a series of x-rays, which build up a three-dimensional picture of the inside of the body. The scan takes 10 30 minutes and is painless. It uses a small amount of radiation, which is very unlikely to harm you and will not harm anyone you come into contact with. You will be asked not to eat or drink for at least four hours before the scan. You may be given a drink or injection of a dye, which allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. It s important to let your doctor know if you re allergic to iodine or have asthma, because you could have a more serious reaction to the injection. You ll probably be able to go home as soon as the scan is over.

9 Drainage of fluid from the pleura (pleural aspiration) Mesothelioma cells can irritate the pleura and cause a pocket of fluid to develop. This is called a pleural effusion. Your doctor can take a sample of this fluid to send to the laboratory as mesothelioma cells are sometimes present. The sample is taken by first using a local anaesthetic to numb the area. A needle is then inserted through the skin into the fluid and some of the fluid is removed. This procedure is done while you re having an ultrasound scan. The scan helps the doctor guide the needle to the place where the fluid is. Biopsy A biopsy is always needed to help the doctors diagnose pleural mesothelioma. It involves taking a sample of tissue from the thickened pleura and, occasionally, from the lymph nodes in the middle of the chest. Your doctor may take a biopsy in different ways: CT or ultrasound guided biopsy a local anaesthetic is used to numb the area. You doctor will pass a special type of needle through the skin into the thickened area while using an ultrasound or a CT scanner to guide the needle into the right place. The needle has a tip that can cut out a sample of tissue.

10 Thoracoscopy This allows the doctors to look at the area of the pleura directly and also to look at other structures around the lungs and take further biopsies, if required. You ll be given either a general anaesthetic or a local anaesthetic with a sedative to make you drowsy. A small cut is made in the chest wall and the doctor puts a thin, flexible tube with a light and camera at the end (thoracoscope) into your chest. An ultrasound scan may be used to guide the thoracoscope to the thickened area of pleura. Your doctor can then take a biopsy of the pleura. Mediastinoscopy Occasionally, your doctor may arrange for you to have a mediastinoscopy. This test may be done if your doctors think the mesothelioma has spread to the lymph nodes in the middle of the chest. This procedure is similar to a thoracoscopy and is usually done under a general anaesthetic. A small cut is made in the base of the neck. A thin, flexible tube with a light and camera at the end (mediastinoscope) is inserted through the cut and is used to examine the lymph nodes in the space between the lungs. Biopsies can also be taken, if needed. Having a biopsy can be uncomfortable but shouldn t be painful. If you have any pain during or after the procedure, let your doctor or nurse know. Once a biopsy has been taken, it s sent to the laboratory and examined by a pathologist (a doctor who advises on the type and spread of cancer). Sometimes, even after taking a biopsy, the doctors may still not be sure of the diagnosis. This is because pleural mesothelioma can be very difficult to tell apart from some other illnesses. In this situation, the biopsy samples may be sent to other laboratories to confirm the diagnosis. Some of your tests may need to be repeated or you may be referred to another hospital for a second opinion. Tests for peritoneal mesothelioma A number of similar tests may be used to help diagnose a peritoneal mesothelioma. Abdominal x-ray This can help show up any fluid or swelling in the abdomen. CT (computerised tomography) scan You may have a CT scan of your abdomen. Drainage of fluid from the abdomen (peritoneal aspiration) Mesothelioma cells can cause fluid to collect in the abdomen. This is called ascites. Your doctor can take a sample of this fluid to send to the laboratory as mesothelioma cells are sometimes present. The sample is taken by first using a local anaesthetic to numb the area. A needle is then inserted through the skin into the fluid and some of the fluid is removed. Biopsy A biopsy of the peritoneum is always needed to help the doctors diagnose peritoneal mesothelioma. It can be carried out by: Laparoscopy This procedure allows the doctor to look at other structures in the abdomen and take further biopsies if required. You ll either be given a general anaesthetic or a local anaesthetic with a sedative to make you drowsy. A small cut is made in the tummy wall and your doctor puts a thin, flexible tube with a light and camera at the end (laparoscope) into your abdomen. Your doctor can then take a small biopsy of the peritoneum. CT or ultrasound guided biopsy The doctor uses an ultrasound or a CT scanner to position the needle accurately for the biopsy. As with pleural mesothelioma, peritoneal mesothelioma may be difficult to diagnose. You may need to have further tests or occasionally be referred to another hospital for a second opinion.

11 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. Staging The stage of a cancer is a term used to describe its size and whether it has spread beyond the area of the body where it started. In general terms, most cancers are described as either stage 1, 2, 3 or 4. Stage 1 cancers are usually small in size and haven t spread. They are often known as early stage cancers. In contrast, stage 4 cancers have usually spread deeply into surrounding tissues or organs and/or to distant parts of the body. They are known as advanced stage cancers. Stage 2 and 3 cancers are between stages 1 and 4. Knowing the stage of the cancer can sometimes help doctors decide on the best treatment. Staging systems are often complicated to understand. You can ask your specialist to give you more information about the staging of your mesothelioma. Treating mesothelioma Pleural and peritoneal mesothelioma are treated in different ways. We have split the information about treatment into two sections, so that you can read the information that s relevant to your type of mesothelioma. Some of the information about treatment is relevant to both types of mesothelioma. The next section explains how treatment is planned. There s also information about giving your consent, and the benefits and disadvantages of treatment. After the treatment sections, there is information on other treatments (supportive therapies) to control symptoms, follow-up after treatment and research trials. Multidisciplinary team If your tests show that you have mesothelioma, you ll be looked after by a multidisciplinary team (MDT). This is a team of people who specialise in treating mesothelioma and in giving information and support. It 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) specialist nurses who give information and support symptom-control specialists radiologists who help to 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.

12 The MDT will work together to plan the best treatment for you. When planning your treatment, they will take a number of factors into account, including your general health and the stage of the mesothelioma. 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. 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. 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 re 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 the treatment is first explained to you. You re 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. 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 on 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.

13 If you ve been offered treatment that aims to cure the cancer, deciding whether to accept it may not be difficult. However, if a cure is not possible and the purpose of treatment is to control the cancer for a period of time, it may be more difficult to decide whether to go ahead. Making decisions about treatment in these circumstances is always difficult, and you may need to discuss in detail with your doctor whether you wish to have treatment. If you choose not to have it, you can still be given 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. 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. Treatment for pleural mesothelioma 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 and other treatments, sometimes known as supportive therapies. Very occasionally, if the mesothelioma is diagnosed before it s spread or if it s only spread to nearby tissues, surgery may be a treatment option. Chemotherapy Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. The drugs work by disrupting the growth of the cancer cells. It s used to help slow the growth of the mesothelioma and control its symptoms. It may not be suitable for some people as you need to be fit enough to have it. Your doctor will let you know if it s a suitable treatment for you. How chemotherapy is given The drugs 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. 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. If you have pemetrexed, you ll be given the vitamins B12 and folic acid as 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.

14 Side effects of chemotherapy 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 next. Feeling sick (nausea) and being sick (vomiting) This is common and may begin soon after the treatment is given and last for a few days. Occasionally, it may last longer. Your doctor can prescribe anti-sickness (anti-emetic) drugs to prevent or greatly reduce nausea and vomiting. Risk of infection Pemetrexed and cisplatin chemotherapy can reduce the number of white blood cells in your body, which help fight infection. White blood cells are produced by the bone marrow. If the number of your white blood cells is low, you ll be more prone to infections. A low white blood cell count is called neutropenia. Always contact the hospital immediately on the 24-hour contact number you ve been given and speak to a nurse or doctor if: you develop a high temperature this may be over 37.5 C (99.5F) or over 38 C (100.4F) depending on the hospital s policy. Follow the advice that you ve been given by your chemotherapy team. you suddenly feel unwell, even with a normal temperature you feel shivery and shaky you have any symptoms of an infection such as a cold, sore throat, cough, passing urine frequently (urine infection) or diarrhoea. If necessary, you ll be given antibiotics to treat any infection. You ll have a blood test before each cycle of chemotherapy to make sure your white blood cells have recovered. Occasionally, your treatment may need to be delayed if the number of your white blood cells is still low. Anaemia The number of red blood cells, which carry oxygen around the body, may also be reduced. A low red blood cell count is called anaemia. This may make you feel tired and breathless. You may need to have a blood transfusion if the number of red blood cells becomes too low. 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. Diarrhoea This can usually be easily controlled with medicine, but tell your doctor if it s severe or continues. It s important to drink plenty of fluids if you have diarrhoea. Numbness or tingling in hands or feet This is due to the effect of cisplatin on nerves and is known as peripheral neuropathy. You may also notice that you have difficulty doing up buttons or similar fiddly tasks. Let your doctor know if you develop these symptoms. Tiredness (fatigue) Feeling tired is a common side effect of chemotherapy, especially towards the end of treatment and for some weeks after it s over. It s important to try to pace yourself and balance rest with some gentle exercise. Eye problems Pemetrexed may cause an inflammation of the lining of the eyelids (conjunctiva) that makes your eyes feel sore, red and itchy. Your doctor can prescribe soothing eye drops to help with this. Changes in hearing Cisplatin may cause ringing in the ears (tinnitus) and you may lose the ability to hear some high-pitched sounds. Very occasionally, your sense of balance may be affected. Any hearing loss (and balance changes if they occur) may be permanent. However, tinnitus usually improves when treatment ends.

15 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. Chemotherapy affects different people in different ways. Some people are able to lead a normal life during their treatment; others find they become very tired and have to take things more slowly. Just do as much as you feel like doing and try not to overtire yourself. Radiotherapy Radiotherapy treats cancer by using high-energy x-rays to destroy cancer cells, while doing as little harm as possible to normal cells. It s usually given by aiming the high-energy x-rays at the lung from a radiotherapy machine. This is known as external beam radiotherapy. The treatment is given in the hospital radiotherapy department as an outpatient. Radiotherapy can be given for different reasons: It can be given to shrink or reduce the size of the mesothelioma this can help relieve symptoms such as pain and breathlessness. It s sometimes given to the chest wall at the place where a biopsy has been done or a drainage tube has been inserted. In this situation, the radiotherapy may prevent the tumour from growing out through the scar. It can also be used alongside surgery and chemotherapy (usually within a clinical trial). Often, only one or two treatments are needed, but occasionally a course of treatment is given over two weeks or so. For single treatments, the planning discussed below isn t needed. Planning your radiotherapy Radiotherapy has to be carefully planned to make sure it s as effective as possible. It s planned by a cancer specialist (clinical oncologist) and it may take a few visits. On your first visit to the radiotherapy department, you ll be asked to have a CT scan or to lie under a machine called a simulator, which takes x-rays of the area to be treated. If you re having radiotherapy to the place where a drainage tube has been, you won t need a CT scan. You may need some small marks made on your skin to help the radiographer (who gives you your treatment) position you accurately and to show where the rays will be directed. These marks must stay visible throughout your treatment, and permanent marks (like tiny tattoos) are usually used. These are extremely small, and will only be done with your permission. It may be a little uncomfortable while they are done. Treatment sessions At the beginning of each session of radiotherapy, the radiographer will position you carefully on the couch and make sure you re comfortable. You ll be alone in the room during your treatment but the radiographers will be able to see you. There may also be an intercom in the treatment room so that they can talk to you during your treatment. Radiotherapy isn t painful, but you will have to lie still for a few minutes during the treatment.

16 Side effects of radiotherapy Radiotherapy can cause general side effects, such as feeling sick (nausea), being sick (vomiting) and tiredness. It can also make you temporarily more breathless. These side effects can be mild or more troublesome, depending on the strength of the radiotherapy dose and the length of your treatment. Your clinical oncologist and radiographer can advise you on what to expect. Nausea and vomiting This can usually be effectively treated with anti-sickness (anti-emetic) drugs, which your doctor can prescribe. Tiredness 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. Discomfort when swallowing This may start in the first week after your treatment and last a few days. Tell your doctors if you have problems swallowing as they can give you medicines to help. They can also prescribe you nutritious, high-calorie drinks if eating is difficult. 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.

17 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. Surgery Surgery is only suitable for a small number of people with pleural mesothelioma. The aim of surgery is usually 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 The type of surgery that may occasionally be used for pleural mesothelioma is called a pleurectomy. This involves removing the tumour and part, or all, of the pleura and the lung tissue close to it. It s used to help stop the build-up of fluid in the lung and to help with breathlessness and pain. Pleurectomy can also help a collapsed lung to reinflate with air, which will help reduce breathlessness. For some people, it may be possible to have a pleurectomy using keyhole surgery. With this type of surgery, only small openings are made instead of one large cut (incision). Pleurectomy is only suitable for some people with mesothelioma. There are other treatments that don t involve major surgery, which can be used to control the build-up of fluid in the lung, breathlessness and pain. If your doctors offer you surgery, they will give you detailed information about it and what to expect. Treatment for peritoneal mesothelioma Treatment for peritoneal mesothelioma is given to control symptoms and to slow tumour growth. Treatments may include chemotherapy (see below) and other treatments sometimes known as supportive therapies. Radiotherapy and surgery aren t usually used to treat peritoneal mesothelioma. Chemotherapy Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. The drugs work by disrupting the growth of cancer cells. It s used to slow the growth of the mesothelioma and control symptoms. It may not be suitable for some people as you need to be fit enough to have it. Your doctor will let you know if it s a suitable treatment for you. How chemotherapy is given The chemotherapy is usually given 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 your type of cancer and how well it is responding to the treatment. The drugs that are used The most commonly used drugs to treat peritoneal mesothelioma are the same as those for pleural mesothelioma. They include pemetrexed (Alimta ) together with cisplatin. If you have pemetrexed, you ll be given the vitamins B12 and folic acid as these help to reduce the side effects of treatment without reducing its effectiveness.

18 Other chemotherapy drugs may sometimes be used to treat peritoneal mesothelioma. These may be given as part of a clinical trial. Side effects Chemotherapy can cause unpleasant side effects. However, many people have few side effects, and those that occur can often be controlled well with medicines. Other treatments (supportive therapies) to control symptoms of mesothelioma For most people with mesothelioma, the main aim of treatment is to control symptoms. There are a number of drug treatments and minor procedures that can be used to control the symptoms of both pleural and peritoneal mesothelioma. There are also several people who can help manage your symptoms, including your hospital consultant, nurse specialist and 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. Treatments to control symptoms of pleural mesothelioma 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. Treating a pleural effusion A pleural effusion is treated by placing a small tube, connected to a drainage bag or bottle, between the two layers of the pleura and draining off the fluid. This is done under a local anaesthetic. You may need to have the fluid removed on a regular basis

19 After the fluid from the pleural effusion has been drained, it may be possible to seal the two layers of the pleura. 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 carried out during a procedure knows as video-assisted thoracoscopy. Your doctor will be able to tell you about this. Some people may have a pleural catheter put in, particularly if they re unable to have pleurodesis. The catheter is a soft flexible tube that can be 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.

20 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. 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. Treatments to control symptoms of peritoneal mesothelioma Peritoneal mesothelioma can cause a build-up of fluid in the tummy (abdomen) known as ascites. When this happens, the tummy becomes swollen and it may cause you to feel sick and breathless. You may also have pain. Treating ascites Ascites can be treated by draining off the fluid from the tummy. This helps to relieve the symptoms. A small cut is made in the abdominal wall under a local anaesthetic, and a thin drainage tube is inserted. The fluid is then slowly collected into a bag. The length of time that the drainage 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 outpatient s clinic. If there is a large amount of fluid however, 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 ascites to build up again, and drainage may need to be carried out more than once. If the fluid builds up again quickly, your doctor may insert a tube known as a catheter into the abdomen. The catheter is used to drain fluid from the abdomen and may be left in place for several weeks. Your doctor will be able to give you more information about this.

21 You may also be prescribed a tablet called spironolactone. This is a water tablet (diuretic), which makes you pass urine more frequently. This helps stop the build-up of fluid in the abdomen. 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. Treatments to control other symptoms of mesothelioma Pain Pain is a common symptom of mesothelioma. If you have pain, let your doctors or specialist nurse know 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 antiinflammatory 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 ).

22 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. Occasionally, if your pain is troublesome, your doctor or nurse may suggest a short admission to hospital or into 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. 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. Loss of appetite Mesothelioma and some cancer treatments can cause problems with eating and digestion. If your appetite is poor, you can add high-protein powders to your normal food or you can replace meals with nutritious, high-calorie drinks. These are available from most chemists. 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. Our booklet Eating problems and cancer has more information about this. 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. Keeping a treatment diary can help you record your energy levels and plan activities for when you re feeling stronger. 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.

23 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 coping with tiredness in our booklet Coping with fatigue. Tiredness is 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. 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 have a booklet about cancer and complementary therapies. After treatment 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 or friends during this time. Rehabilitation and recovery Mesothelioma affects people in different ways. Some people find that they need to take things more slowly for a while after treatment, especially if they ve been in hospital or have had to rest at home for long periods. Others find that it doesn t take them long to get back to their normal routine. If you think you need extra help at home, let the doctors or nurses who are looking after you know. They can assess your needs and organise extra support. They can also arrange for you to see a physiotherapist if you need help with your mobility or advice on breathing exercises. Share your experience When treatment finishes, many people find it helps to talk about it and share their thoughts, feelings and advice with other people. This can be especially helpful for other people with mesothelioma who are perhaps about to start their treatment. Just hearing about how you ve coped, what side effects you had and how you managed them is very helpful to someone in a similar situation. 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:

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

25 Our booklet How are you feeling? discusses the emotions you may have in more detail, and has suggestions for coping with them. 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. You may find our booklet Talking about your cancer helpful. 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. Even if a cancer is not curable, current treatments often mean that it can be controlled for some time. Many people are anxious about whether their treatment will work and whether they will 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. Finding out more about your illness may help to relieve some of the uncertainty. You might find it helpful to talk to other people in your situation. Some people find some form of spiritual support helpful at this time, and you may like to talk to a spiritual or religious adviser. 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. Resentment Understandably, you may feel resentment against your employer (or former employer) for not making sure that you were protected against asbestos exposure. These feelings may be very intense at different times during your treatment.

26 Some people with mesothelioma may not feel well enough to work or to take on their usual responsibilities within the family. This loss of role may be particularly devastating and can cause resentment as well as other feelings, such as depression. It usually helps to discuss these feelings, rather than keeping them to yourself. 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. 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. Our booklet Talking to children when an adult has cancer includes discussion about sensitive topics. What you can do One of the hardest things to cope with can be the feeling that the cancer and its treatment, or even pursuing a claim for compensation, 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.

27 This could mean spending more time with family, going on holiday 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 help themselves by eating a healthy diet, gently exercising or finding a relaxing complementary therapy. Learning 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. Information for carers 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. We have a booklet about caring for someone with advanced cancer and the professionals that can help. Looking after yourself 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 too. 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 Hello, and how are you? helpful. It s based on carers experiences and has lots of practical tips and information. 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. Our booklet Lost for words how to talk to someone with cancer has more suggestions if you have a friend or relative with cancer. 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 know that some people may need a post-mortem when they die. This is why we have included information about this here.

28 Because mesothelioma is an occupational disease, when a person dies, the doctor who signs the death certificate must inform the coroner. 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. If a post-mortem is needed to confirm the cause of death, an inquest will be held. An inquest is a legal investigation into the circumstances surrounding a person s death. The need for a post-mortem and inquest will usually mean that there is a delay before your relative or friend s funeral can take place. Most funerals can happen after the post-mortem but the inquest may not be completed until some months after this. It can be distressing when you have to deal with these issues as well as the possible death of your relative. *********************** ********************************************************************************** Rs.40.00 IMPORTANT DISCLAIMER This booklet published by JASCAP is not designed to provide medical advice or professional services. It is intended to be for educational use only. The information provided in this booklet by JASCAP is not a substitute for professional care and should not be used for diagnosing or treating a health problem or a disease. Please consult your doctor for any health related problem.