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
Mesothelioma 5
Diagnosing mesothelioma 21
Treating mesothelioma 37
After treatment 75
Financial help and work 81
Your feelings and relationships 97
Information for carers 107
‘As a family we
knew this was
what he wanted
and we all agreed
to rally around to
help Joyce cope
with his care’
MesothelioMa
What is cancer? 6
The lymphatic system 8 Mesothelioma 9 Risk factors and causes 14 Symptoms 18
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.
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 Armpit (axillary) lymph nodes Spleen Thymus Diaphragm Groin (inguinal) lymph nodes
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.
10 Understanding mesothelioma
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).
Structure of the lungs and pleura
Lymph nodes Outer pleura Inner pleura Pleural cavity Right bronchus Windpipe (trachea) Left bronchus12 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 Bladder Rectum (back passage) Womb
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.
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).
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.
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’
Diagnosing
mesothelioma
How mesothelioma is diagnosed 22 Staging 33
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.
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.
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.
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’
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.
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.
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.
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.
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’
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.
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
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.
knew this was
what he wanted
and we all agreed
to rally around to
help Joyce cope
with his care’
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.
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.
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.
48 Understanding mesothelioma
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.
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.
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.’
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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.
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.
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.
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.
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.
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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.
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.
A pleural effusion
Pleural effusion Inner pleura Pleural cavity Outer pleura Rib62 Understanding mesothelioma
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.
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.
We have more detailed information in our booklet
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
50 100 150 200 250 300 350 400 450 500 Peritoneum Womb Bowel Bladder Rectum (back passage) Ascites
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.
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.
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.
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.
We have a booklet called Controlling cancer pain, which we can send you.
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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.
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.
Our booklet Eating problems and cancer has more information.
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.
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.
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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.
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’
after
treatmenT
Follow-up 76 Rehabilitation and recovery 77 Share your experience 79
