A practical guide to understanding cancer

Transcription

1 A practical guide to understanding cancer

2 Contents 1 Contents About this booklet 3 The liver and primary liver cancer 5 Diagnosing primary liver cancer 15 Treating primary liver cancer 25 After your treatment 57 Your feelings and relationships 65 Work and financial support 75 Further information 81 MAC11917 Liver e03 p MV.indd 1 14/07/ :23:25

3 About this booklet 3 About this booklet This booklet is about primary liver cancer. We hope it answers some of your questions and helps you deal with some of the feelings you may have. Primary liver cancer is cancer that starts in the liver. Cancer that starts in another part of the body and spreads to the liver is called secondary or metastatic cancer. We can send you separate information about secondary liver cancer. We can t advise you about the best treatment for you. This information can only come from your own doctor, who knows your full medical history. At the end of this booklet there are some useful addresses and helpful websites (pages 87 92). On page 93 there is space for you to write down questions for your doctor or nurse. You may also want to discuss this information with our cancer support specialists on freephone (Monday Friday, 9am 8pm). You can also visit macmillan.org.uk If you re hard of hearing, you can use textphone , or Text Relay. For non-english speakers, interpreters are available. MAC11917 Liver e03 p MV.indd /07/ :23:32

4 4 Understanding primary liver cancer If you have found this booklet helpful, you could pass it on to your family and friends. They may also want information to help them support you. We have a video on our website about primary liver cancer, which you may find helpful. You can watch it at macmillan.org.uk/primarylivercancer The liver and primary LivEr cancer What is cancer? 6 The liver 8 Primary liver cancer 10 Risk factors and causes 12 Symptoms 14 MAC11917 Liver e03 p MV.indd /07/ :23:32

5 6 Understanding primary liver cancer What is cancer? 7 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 cancer (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. 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. Normal cells Cells forming a tumour MAC11917 Liver e03 p MV.indd /07/ :23:33

6 8 Understanding primary liver cancer The liver 9 The liver The liver is the largest organ in the body. It s in the upper part of the tummy (abdomen) on the right-hand side under your lower ribs. It s surrounded by a strong fibrous capsule and is divided into two lobes (see diagram below). The liver carries out important functions, such as: storing sugars and fats so they can be used for energy producing proteins which help blood to clot, prevent too much bleeding and keep the balance of fluid in the body producing bile which breaks down fats so they can be absorbed by the bowel (bile travels from the liver through the bile duct to the bowel) Liver Gall bladder Small bowel (duodenum) Stomach Bile duct Pancreas breaking down harmful substances, such as alcohol and drugs, so they can be passed out in urine or stools. The liver is good at repairing itself. It can work well even when only a small part of it is working normally. The liver and surrounding organs MAC11917 Liver e03 p MV.indd /07/ :23:33

7 10 Understanding primary liver cancer Primary liver cancer Primary liver cancer is rare in the UK, but the number of people developing it is increasing. Around 4,200 people in the UK are diagnosed with it each year. In other parts of the world, such as some parts of Africa and Asia, it s one of the most common cancers. Primary liver cancer is much more common in men than in women. It is more likely to affect people as they get older. Hepatocellular carcinoma (HCC) is the most common type of primary liver cancer. It s sometimes called hepatoma. It starts in the main cells of the liver, called hepatocytes. HCC is more common in people with a chronic (ongoing) liver disease, usually cirrhosis (see page 12). A rare type of HCC called fibrolamellar HCC usually affects younger women and is not related to previous liver disease. There is another less common primary liver cancer called cholangiocarcinoma (or bile duct cancer). This starts in the cells lining the bile duct. Angiosarcoma is a very rare type of liver cancer, which starts in the blood vessels of the liver. We can send you more information about these types of cancer. This booklet is about hepatocellular carcinoma (HCC), the most common type of primary liver cancer. To make it simpler, we call it HCC throughout the rest of the booklet. Some primary tumours in the liver are non-cancerous (benign). They are usually small and often found by chance. They don t usually become cancerous and don t usually need to be removed. MAC11917 Liver e03 p MV.indd /07/ :23:45

8 12 Understanding primary liver cancer Risk factors and causes 13 Risk factors and causes We don t know the exact cause of HCC. But certain things called risk factors can increase a person s chance of developing it. Having one or more risk factors doesn t mean you will get cancer, and not having a risk factor doesn t guarantee you won t. Being male and older are both risk factors for HCC. Other risk factors for HCC are: Cirrhosis Cirrhosis is scarring throughout the liver, which damages it and prevents it working properly. Cirrhosis increases the risk of HCC but only a small number of people with cirrhosis develop HCC. Cirrhosis can have different causes. These include: long-term infection with the hepatitis B or hepatitis C virus a high intake of alcohol over a long period of time conditions such as non-alcoholic fatty liver disease, haemochromatosis (a genetic condition) and primary biliary cirrhosis. These are described below. Non-alcoholic fatty liver disease This is when fat builds up in the liver and causes damage. This condition is more common in people who are very overweight (obese) or have Type 2 diabetes. Primary biliary cirrhosis This is a long-term condition that damages the small bile ducts in the liver. Diabetes People with Type 2 diabetes have a much higher risk of developing HCC. Smoking People who smoke tobacco have a much higher risk of liver cancer than non-smokers. Other risk factors Having a close family member (father, mother, sister or brother) with primary liver cancer increases a person s risk, but it s not clear why this is. Anabolic steroids (mainly used by bodybuilders) taken over a long time slightly increase the risk of HCC. A poison called aflatoxin, found in mouldy peanuts and grains, is a major risk for HCC in parts of Africa and Asia. Haemochromatosis This is an inherited condition that causes iron levels to build up in the body. When it s diagnosed and treated early, it doesn t usually cause problems. MAC11917 Liver e03 p MV.indd /07/ :23:45

9 14 Understanding primary liver cancer Symptoms In the early stages of HCC, there are often no symptoms. Some people with chronic liver disease are diagnosed before any symptoms appear through tests to check how their liver is working. Possible symptoms include: losing your appetite and feeling full very quickly after eating Diagnosing primary liver cancer losing weight with no obvious reason feeling sick (nausea) and vomiting feeling extremely tired, generally weak or unwell aching or pain in the area of the liver (see page 8) a high temperature and flu-like symptoms How primary liver cancer is diagnosed 16 Staging 22 Child-Pugh classification 23 a swollen tummy caused by fluid build-up (called ascites) a yellow tinge to the skin and whites of the eyes (called jaundice). It s important to see your doctor if you have any of these symptoms, even though they can be caused by other conditions as well. It s especially important to get them checked if you have risk factors for liver cancer. MAC11917 Liver e03 p MV.indd /07/ :23:45

10 16 Understanding primary liver cancer How primary liver cancer is diagnosed 17 How primary liver cancer is diagnosed You usually begin by seeing your GP. They will ask about your symptoms and examine you. Your GP will usually take blood samples to check your general health and may arrange other tests, such as an ultrasound (see opposite). They will refer you to a hospital for specialist advice. If your GP suspects you may have cancer, you should see a specialist within two weeks. If you are already seeing a liver specialist (hepatologist) because you have chronic liver disease, you may be diagnosed through having tests. People with liver cirrhosis usually have regular blood tests and ultrasound scans to monitor their liver. These tests can help to diagnose HCC at an earlier stage. At the hospital You may see a hepatologist straight away. Or you may see a doctor who specialises in treating conditions of the stomach and bowel (gastroenterologist). They will ask about your symptoms and your general health and check whether you have risk factors for liver disease. The doctor will carefully examine you by feeling your tummy area (abdomen). They may take some more blood tests and they will explain which other tests you need. Blood tests You ll have blood tests called liver function tests (LFTs) to check how your liver is working. You'll also have a blood test to check a chemical called alpha-fetoprotein (AFP) which is sometimes higher in people with HCC. Doctors sometimes check AFP levels before and after your treatment to see how well the liver is working. Liver ultrasound scan A liver ultrasound scan uses sound waves to make up a picture of the liver. This test is painless and only takes a few minutes. It s done in the hospital scanning department. You ll be asked not to eat anything for at least four hours before your appointment. Once you are lying comfortably on your back, the person doing the ultrasound spreads a gel onto your tummy area. They then pass a small device, which produces the sound waves, over the area. The sound waves are converted into a picture by a computer. CT (computerised tomography) scan A CT scan (see picture on page 19) takes a series of x-rays, which build up a three-dimensional picture of the inside of the body. The scan takes minutes and is painless. It uses a small amount of radiation, which is very unlikely to harm you and will not harm anyone you come into contact with. You will be asked not to eat or drink for at least four hours before the scan. You may be given a drink or injection of a dye, which allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. It s important to let your doctor know if you are allergic to iodine or have asthma, because you could have a more serious reaction to the injection. You ll probably be able to go home as soon as the scan is over. MAC11917 Liver e03 p MV.indd /07/ :23:45

11 18 Understanding primary liver cancer 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, for example a pacemaker, surgical clips, or bone pins. You should also tell your doctor if you ve ever worked with metal or in the metal industry, as very tiny fragments of metal can sometimes lodge in the body. If you do have any metal in your body, it s likely that you won t be able to have an MRI scan. In this situation, another type of scan can be used. Before the scan, you ll be asked to remove any metal belongings, including jewellery. Some people are given an injection of dye into a vein in the arm, which doesn t usually cause discomfort. This is called a contrast medium and can help the images from the scan to show up more clearly. During the test, you ll lie very still on a couch inside a long cylinder (tube) for about 30 minutes. It s painless but can be slightly uncomfortable, and some people feel a bit claustrophobic. It s also noisy, but you ll be given earplugs or headphones. You can hear, and speak to, the person operating the scanner. Laparoscopy This operation allows the surgeon to look at the liver and other organs in the area and helps them decide if surgery to remove the tumour is possible. You have it done under a general anaesthetic, so you may have to stay in hospital overnight. MAC11917 Liver e03 p MV.indd /07/ :24:00

12 20 Understanding primary liver cancer How primary liver cancer is diagnosed 21 The doctor makes 3 4 small cuts, approximately 1cm (½ inch) in length, in the skin and muscle of your lower tummy (abdomen). Some carbon dioxide gas is pumped into the abdomen to lift up the tummy wall so that the organs can be seen clearly. The doctor then puts a thin fibre-optic tube with a tiny camera on the end (laparoscope) through one of the cuts into the abdomen. This allows the surgeon to look at the liver and the area around it. They may take a small sample of tissue (biopsy) for examination under a microscope. You should be able to get up as soon as the effects of the anaesthetic have worn off. You may have discomfort in your neck and/or shoulder after the laparoscopy. This goes away in a day or two. Some people have uncomfortable wind after surgery in the abdomen. Taking sips of peppermint water and walking around can help. There is a small risk of the cancer cells spreading when the doctor removes the biopsy needle. Your specialist will talk this over with you. Waiting for test results It may take up to two weeks for the results of your tests to be ready, and a follow-up appointment will be made for you. This waiting period can often be a very anxious time and it may help you to talk things over with a relative, close friend, your specialist nurse at the hospital or one of the support organisations mentioned on pages You can also call and speak to one of our cancer support specialists. Liver biopsy A biopsy is not always necessary. Doctors may be able to diagnose HCC with scans or after surgery to remove the tumour (see pages 33 39). Your doctor will explain if you need a biopsy. You have a local anaesthetic injection into the skin to numb the area. The doctor then passes a fine needle into the tumour through the skin. A CT scan or ultrasound guides the doctor to the exact area to take the biopsy from. You will stay in hospital for a couple of hours, or sometimes overnight, after a liver biopsy because there s a risk of bleeding afterwards. The nurses will check you regularly and monitor your blood pressure. MAC11917 Liver e03 p MV.indd /07/ :24:12

13 22 Understanding primary liver cancer Staging 23 Staging The stage of a cancer describes its size and whether it has spread from where it first started. Knowing the stage is important because it helps you and your doctors to decide on the best treatment for you. Doctors may use a number system to find out the stage of HCC: Stage 1 There is one tumour in the liver and the cancer hasn t spread into any blood vessels in the liver. Stage 2 There is one tumour that has spread into a blood vessel, or several tumours that are all no bigger than 5cm. Stage 3 is divided into: 3A There is more than one tumour and at least one is bigger than 5cm. 3B The cancer has grown into a major blood vessel in the liver. 3C The cancer has spread outside the liver into organs nearby (except the gall bladder). Child-Pugh classification Doctors will also assess how well your liver is working using the Child-Pugh classification system. It gives a score from A to C, depending on how well the liver is working. A means the liver is working well, while C means it s very damaged and as a result isn t working well. The results help doctors decide on the treatments that are best for your situation. Having certain treatments will depend on how well the liver is able to cope. Child-Pugh looks at: the level of bilirubin (a waste product of old red blood cells) in the blood the level of albumin (blood protein) in the blood how quickly your blood clots (prothrombin time) whether there s any fluid build-up in the abdomen (ascites) whether liver damage is affecting how the brain is working (encephalopathy). Stage 4 is divided into: 4A The cancer has spread outside the liver into lymph nodes in that area. Lymph nodes are sometimes called glands, and help fight infection. 4B The cancer has spread to another part of the body, such as the lungs or bones (sometimes called secondary or metastatic liver cancer). MAC11917 Liver e03 p MV.indd /07/ :24:12

14 Treating primary liver cancer MAC11917 Liver e03 p MV.indd Treatment overview 26 Surgery 33 Using heat or alcohol to destroy the tumour 41 Embolisation treatments 43 Targeted therapy drugs 46 Chemotherapy 49 Radiotherapy 53 Research clinical trials 55 14/07/ :24:28

15 26 Understanding primary liver cancer Treatment overview 27 Treatment overview The treatment you have will usually depend on a number of different factors: where the cancer is in the liver there may be several areas in different parts of the liver the size and number of the tumour or tumours, and whether the cancer has spread outside the liver whether any important blood vessels in the liver are affected how well your liver is working and your general health. The most effective treatments to try to cure HCC are a liver transplant or removing part of the liver with surgery. But often surgery isn t possible because the cancer is too advanced. Treatments that apply heat or alcohol (see pages 41 42) directly to the cancer cells to destroy them may be used in certain people who can t have surgery. They can work well, particularly with small tumours. Chemoembolisation (see pages 43 45) is when chemotherapy is given directly into the liver and the blood supply to the tumour is cut off. Doctors may recommend it when the cancer is advanced in the liver but has not spread outside it. It may help to control the cancer and prolong your life. Another treatment, called radioembolisation, is less commonly used. It works in a similar way but uses radiation rather than chemotherapy to destroy cancer cells. Doctors often advise using a targeted therapy drug called sorafenib when the cancer is very advanced in the liver or has spread outside it. Sometimes chemotherapy (see pages 49 52) may be used. You have these treatments to try to control the cancer, prolong your life and reduce the symptoms. Radiotherapy (see pages 53 54) may occasionally be used to relieve pain if the cancer has spread to another part of the body, such as the bones. If you decide not to have treatment, there is a still a lot that can be done to control your symptoms and support you. Your doctor can refer you to a team of doctors and nurses who specialise in controlling symptoms (called a palliative care team). Doctors are looking at newer treatments and different ways of giving existing treatments. Your specialist may talk to you about taking part in a research trial (see pages 55 56). How treatment is planned In most hospitals, a team of specialists will meet to discuss the best treatment for you. This multidisciplinary team (MDT) will include: a hepatologist (liver disease specialist) a surgeon who specialises in liver cancers a medical oncologist (chemotherapy specialist) a clinical oncologist (radiotherapy and chemotherapy specialist) MAC11917 Liver e03 p MV.indd /07/ :24:28

16 28 Understanding primary liver cancer Treatment overview 29 a nurse specialist radiologists who help to analyse x-rays and scans pathologists who advise on the type and extent of the cancer. It may also include other healthcare professionals, such as a palliative care doctor or nurse who specialises in symptom control, a dietitian, a physiotherapist, an occupational therapist (OT), a psychologist or a counsellor. After the meeting, your specialist doctor or nurse will talk to you about treatment, what it involves and the possible side effects. You and your doctor can decide on the best treatment for you. You will probably also want to talk it over with your family or close friends. If two treatments are likely to be equally helpful, your doctor may ask you to decide which one to have. Make sure you have enough information about the different options. You can then decide on the right treatment for you. If you have any questions about your own 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 the space on page 93 to write down your questions and the answers you receive. The benefits and disadvantages of treatment Many people are frightened of 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. In people with early-stage liver cancer, surgery may be done with the aim of curing the cancer. Other treatments may be used to control the cancer and prolong your life. If the cancer is advanced or has spread to other parts of the body, treatment may only be able to control it. It may prolong your life, improve your symptoms and give you a better quality of life. However, for some people in this situation, the treatment will have no effect on the cancer and they will get the side effects without any of the benefit. 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. MAC11917 Liver e03 p MV.indd /07/ :24:28

17 30 Understanding primary liver cancer Treatment overview 31 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. 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. It can be helpful to have a list of questions ready, so that you can make sure your concerns are covered during the discussion. 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. MAC11917 Liver e03 p MV.indd /07/ :24:28

18 Surgery 33 Surgery Surgery is the most effective treatment for HCC. The type of operation you have depends on the number of tumours that are in the liver and how damaged the liver is from chronic liver disease. Only a small number of people with HCC can have surgery. There are two types of operation: a liver transplant, where your liver is removed and replaced with a liver from another person (a donor) a liver resection, where they remove only the part of your liver where the cancer is. Your surgeon and specialist nurse will tell you if surgery is a possible option for you. They will explain what it involves and what the possible complications or risks are. An operation to your liver is major surgery, so it s important to have all the information you need before you decide. Liver transplant A specialist may recommend a liver transplant if your liver is too damaged for you to have a resection, or there are many tumours in the liver. You need to be reasonably fit to cope with a transplant. Your liver team will assess you very carefully to make sure it s a suitable treatment for you. Your specialist also needs to be confident that the cancer cells have not spread. After a transplant, you need to take drugs called immunosuppressants for the rest of your life so your body doesn t reject the new liver. But these drugs make the immune system less able to fight any cancer cells that have spread. MAC11917 Liver e03 p MV.indd /07/ :24:32

19 34 Understanding primary liver cancer Surgery 35 In HCC, a liver transplant can only be done if you have: a single tumour that is 5cm or less in size a single tumour between 5cm and 7cm that doesn't grow over six months up to five tumours of 3cm or less. It can take time perhaps months for a liver to become available. You may have other treatments to help control the cancer during this time. Unfortunately, in some people the cancer may progress so that a transplant is no longer possible. Sometimes it may be possible to have part of a liver transplanted from a living donor. This is a newer type of operation and is only available in a few hospitals. The donor has surgery to remove a lobe of their liver, which is then immediately transplanted. Recovering from a liver transplant is a long, slow process. You have to gradually build up your health and fitness. It can take many months before you get back to doing everyday activities. We haven t provided detailed information here about your care before or after a liver transplant. Your specialist liver team will talk to you about what to expect before and after the operation. Liver resection This operation is usually suitable for people who: have a single tumour don t have cirrhosis, or have cirrhosis that is still at an early stage. The surgeon removes the part of the liver where the cancer is. The amount of liver they remove depends on the size and position of the tumour(s). They may remove only a small part of the liver or a whole lobe of the liver (called a hemi-hepatectomy). But your liver needs to be working well so that the remaining liver can cope after the operation. In some hospitals, a resection may be done using keyhole surgery (laparoscopic surgery). Some people also have radiofrequency ablation (see pages 41 42) during surgery. This uses heat to destroy cancer cells. Before your operation You need to have tests to make sure you are physically well enough to cope with the operation. These are usually done a few days before your operation at a pre-assessment clinic. They include tests on your heart and lungs. You will see a member of the surgical team and a specialist nurse who will talk to you about the operation. You may see the doctor who gives you the anaesthetic (the anaesthetist) at a clinic or when you re admitted to hospital. Make sure that you talk through any questions or concerns that you have about the operation. MAC11917 Liver e03 p MV.indd /07/ :24:32

20 36 Understanding primary liver cancer Surgery 37 If you smoke, it s important to try to give up or cut down before your operation. This will help reduce your risk of problems, such as a chest infection, and help your wound to heal after the operation. Your GP can give you advice and you can read our booklet Giving up smoking. If you think you might need help when you go home after your operation, let the nurses know as soon as possible. It means the staff can help you make arrangements in plenty of time. Some hospitals follow an enhanced recovery programme (ERP). This can help reduce complications following surgery and speed up your recovery. It involves careful planning before your operation to prepare you. You ll be asked to have a high-protein and high-calorie drink before and after your surgery. After the operation, the nurses encourage you to start moving around as soon as possible, sometimes on the same day. You will be allowed to eat and drink soon after surgery. Not all hospitals use the ERP for liver surgery and it s not suitable for everyone. You ll usually be admitted to hospital the day before your operation or the same morning. The nurses give you special elastic stockings (TED stockings) to wear during and after the operation. They help prevent blood clots forming in your legs. After your operation After your operation, you will usually be taken to the intensive care ward or high-dependency unit for about 24 hours. This is routine with major operations. The liver has a very good blood supply and there is a risk that it may bleed after surgery. The doctors and nurses will monitor this by keeping a close check on your blood pressure. If you have a liver transplant, you will usually be in intensive care for a few days. Moving around The nurses will encourage you to start moving around as soon as possible. You ll usually be helped to get out of bed the day after your operation or sooner. While you re in bed, it s important to move your legs regularly and do deep breathing exercises. This helps to prevent chest infections and blood clots. Your physiotherapist or nurse will show you how to do the exercises. Drips and tubes You may have some of the following for up to a few days: A drip (infusion) into a vein in your arm or neck to give you fluids until you re eating and drinking again. A thin tube going into your back to give you painkilling drugs that numb the nerves and stop you feeling sore. This is called an epidural. A tube that goes up your nose and down into your stomach (nasogastric tube). The nurses use this to remove fluid so you don t feel sick. A drainage tube to remove fluid from your wound, allowing it to heal properly. A small, flexible tube going into your bladder to drain urine into a bag. This is called a urinary catheter. Pain There are effective ways to prevent and control pain after surgery. You will usually have painkillers given into your back for the first few days. During surgery, the anaesthetist puts a fine tube into your back and connects it to a pump that gives you a constant dose of painkillers. MAC11917 Liver e03 p MV.indd /07/ :24:32

21 38 Understanding primary liver cancer Surgery 39 Some people may have their painkillers given into a vein (intravenously) through an electronic pump, which gives you a constant dose of painkiller. If you feel sore, you can give yourself an extra dose by pressing a button but it s set so you can t have too much. This is called patient-controlled analgesia (PCA). When you no longer need the epidural or PCA, you will have painkillers as tablets. Let your nurses and doctors know if you re in pain, so they can give you the dose of painkillers that s right for you. Your wound The nurses usually keep your wound covered with a dressing for the first few days. They will check it regularly to make sure it is healing well. After about ten days, they remove your staples or stitches. You may have this done by a district nurse who visits you at home after you leave hospital. Going home Make sure you get enough rest and eat well. This will help your recovery. Your liver specialist will advise you not to drink alcohol for about three months while your liver is regrowing. After a transplant, you need to avoid alcohol and smoking. Gentle exercise, such as regular short walks will help build up your energy and you can gradually do more as you recover. It is usually fine to have sex anytime after the operation if you feel ready. You may find you re just too tired or that your sex drive is low, but this should improve with time. Some people take longer than others to recover. It depends on your situation, so don t be hard on yourself. At your check-up at the outpatient clinic, your doctor will check on your recovery and talk to you about the results of your operation. This is a good time for you to talk about any problems you ve had after the operation, although you can contact them sooner if you are unwell or worried about anything. Most people are able to go home 5 8 days after their resection operation or 2 3 days after a laparoscopic resection. After a liver transplant, you will usually be in hospital for a few weeks. When you go home, you ll have regular checks to make sure your body isn t rejecting the new liver. You will need painkillers for the next few weeks. It may take up to three months after a resection before you start getting back to normal. You need to avoid lifting heavy loads, such as shopping, or doing things like vacuuming or gardening for at least eight weeks to give your wound time to heal. Your specialist will tell you when you should be able to drive again. Recovery takes longer after a transplant and your doctor or nurse will tell you what to expect. MAC11917 Liver e03 p MV.indd /07/ :24:32

22 Using heat or alcohol to destroy the tumour 41 Using heat or alcohol to destroy the tumour Treatments that destroy the tumour by applying heat or alcohol directly to the tumour can be used usually to treat tumours smaller than 3cm. This is called tumour ablation. It may be suitable if you can t have surgery, or choose not to have surgery. Doctors usually recommend these treatments when there is a good chance that they will be successful. Your liver specialist will explain if they are possible treatments for you. They can also be carried out during a laparoscopy or a liver resection. Radiofrequency ablation (RFA) This treatment destroys cancer cells by heating them to a high temperature using radiowaves. The doctor passes a fine needle (called an electrode) through your skin into the liver tumour. An electrical current is passed through the needle into the tumour to heat the cancer cells and destroy them. You may need to stay overnight in hospital to have this done. The treatment is usually done under a general anaesthetic. The doctor uses ultrasound or CT scanning to help them guide the needle directly into the tumour. Afterwards, you will have 1 3 tiny holes in your tummy area, which will usually heal quickly. Some people will have RFA more than once. You usually have a CT scan a few weeks after RFA to see how well it has worked. MAC11917 Liver e03 p MV.indd /07/ :24:37

23 42 Understanding primary liver cancer Embolisation treatments 43 Side effects The side effects of RFA are usually mild and may last up to a week. They include pain in the liver area, which you can control by taking regular pain killers. Other side effects are a fever (high temperature) and feeling tired and generally unwell. These side effects are due to the body getting rid of the cells that have been destroyed. Try to drink plenty of fluids and get enough rest. Your doctor or nurse may ask you to contact the hospital if your temperature doesn t settle within a few days or if it goes above 38 C. This is to make sure you don t have an infection. Percutaneous ethanol injection (PEI) This involves injecting alcohol (ethanol) through the skin and into the liver tumour. The alcohol destroys the cancer cells. You have this done in the scanning department. You ll be given a local anaesthetic to numb the area first. An ultrasound helps the doctor guide the needle exactly into the tumour. You usually need several treatments, depending on the number of tumours and their size. If the tumour grows again, the treatment can be repeated. Side effects Side effects include pain and fever, and are usually mild. Let your doctor know if you develop any side effects, as they can usually be controlled with medicines. Embolisation treatments Embolisation is when substances are injected into the liver to try to block the blood flow to the cancer cells. This reduces the supply of oxygen and food to the cancer, which can make it shrink or stop it from growing. In HCC, embolisation is usually given in combination with chemotherapy and is called chemoembolisation. You need to be reasonably well to have this done, and the part of your liver that s not affected needs to have a good blood supply. Less commonly, embolisation is done with radiation, called radioembolisation or SIRT. These treatments can be used when the cancer has spread throughout the liver and cannot be removed with surgery or treated with ablation (see pages 41 42). They are not used if the cancer has spread outside the liver. Chemoembolisation In chemoembolisation, a chemotherapy drug is injected directly into the liver. This means the tumour gets a higher concentration of the drugs. Because the drug is mixed with a substance called lipiodol, it stays in the liver for longer and works better. After the chemotherapy drug is given, you have treatment to cut off the blood supply (embolisation). In some centres, the chemotherapy drug is loaded into special beads, which keep the drug in the tumour and cut of the blood supply at the same time. Chemoembolisation is sometimes called TACE (trans-arterial chemoembolisation) or CT-ACE (computerised tomographyguided arterial chemoembolisation). MAC11917 Liver e03 p MV.indd /07/ :24:37

24 44 Understanding primary liver cancer Embolisation treatments 45 The drugs most often used are doxorubicin and cisplatin. We have more information on these drugs, which you may find useful. How it is given You may need to stay in hospital overnight and possibly for a day or two. Before treatment, the nurse or doctor will usually give you a mild sedative to help you relax. They then inject some local anaesthetic into the skin at the top of your leg (your groin) to numb the area. After this, the doctor makes a tiny cut in the skin. They put a fine tube called a catheter through the cut into a blood vessel called the femoral artery in your groin. The doctor passes the catheter up along the artery until it reaches the blood vessels that take blood to the liver (hepatic artery) and supply the tumour. You have an x-ray of the blood vessels (called an angiogram) at the same time and a dye is put into the catheter first. This shows the blood supply on the x-ray so the doctor sees exactly where the catheter is. After this, they slowly inject the chemotherapy into the liver through the catheter. A while later the doctor injects a gel or tiny plastic beads to block the blood supply to the tumour. Or you have the chemotherapy drug in a bead given at the same time. You can have chemoembolisation several times. It is sometimes given with radiofrequency ablation (see pages 41 42). Your doctor can explain if this would be helpful for you. Side effects Chemoembolisation can cause side effects such as sickness, pain, a raised temperature and feeling very tired. You ll be given antisickness drugs and painkillers to take until the side effects reduce. This is usually within 1 2 weeks. It s unusual for chemoembolisation to cause side effects on your blood (see pages 50 52) unlike chemotherapy into a vein, because the drugs are concentrated in the liver. Serious complications are rare, but occasionally it can damage the liver. Radioembolisation or selective internal radiotherapy (SIRT) This treatment is done less often and is not available in all hospitals. A doctor injects tiny radioactive beads (microspheres) into a blood vessel close to the tumour. The radiation destroys the blood vessels and stops blood flow to the tumours. Without a blood supply, the tumours shrink and may die. The radiation only travels a few millimeters so other parts of the liver aren t affected and you are not radioactive. The beads stay in the liver permanently and are harmless. You have radioembolisation through a fine tube (catheter) placed in an artery in your groin in the same way as chemoembolisation. You have an angiogram about a week before to check the blood flow to the liver. You stay in hospital for 1 4 days to have SIRT. The side effects can last for a few days and include a high temperature and tummy pain straight after the injection. Other side effects include feeling sick and diarrhoea. Your doctor will prescribe drugs to control these until they go away. Rarely it may damage the liver. You may be able to have SIRT again, depending on how well it works for you. We have more information about SIRT that you may find useful. MAC11917 Liver e03 p MV.indd /07/ :24:37

25 46 Understanding primary liver cancer Targeted therapy drugs 47 Targeted therapy drugs Targeted therapy drugs, sometimes called biological therapies, target the differences between cancer cells and normal cells. A targeted therapy drug called sorafenib (Nexavar ) can be used to treat HCC that is advanced or has spread to other parts of the body. Other targeted therapy drugs may be used in clinical trials (see pages 55 56). Sorafenib interferes with the signals that tell cancer cells to grow and stops the cancer from making new blood vessels. It may help to slow the tumour from growing and relieve symptoms. Doctors usually prescribe it for as long as it works well for you. You take sorafenib as a tablet, twice a day at the same time. For most people, the side effects are usually mild and may lessen after a few weeks. Always tell your doctor or nurse about any side effects you have. They can prescribe drugs to help control them and give you advice about managing them. Side effects Side effects of sorafenib can include: Diarrhoea This is usually mild but let your doctor or nurse know. Your doctor can prescribe drugs to control it if doesn t improve. It s important to drink plenty of fluids if you have diarrhoea. Skin changes You may get a rash, redness, dryness or itching. Tell your doctor or nurse if this happens. They can advise you about creams or lotions to use. Feeling sick Any sickness is usually mild, but let your doctor know if this happens. They can prescribe drugs to control this. Try to eat lots of small meals or snacks regularly if you don t have much appetite. Tiredness and lack of energy It s important to get the right balance of having enough rest and being physically active. Going for regular short walks will help you to feel less tired. Hair thinning Some people notice that their hair becomes thinner while taking sorafenib but it is usually mild. Raised blood pressure Sorafenib may cause this. Tell your doctor or nurse if you have ever had any problems with your blood pressure. Your nurse can check it regularly during your treatment. We can send you more information about sorafenib. Sore palms and feet (hand/foot skin reaction) The palms of your hands and soles of your feet may get sore and red. Tell your cancer doctor or nurse and always let them know if it gets worse. MAC11917 Liver e03 p MV.indd /07/ :24:37

26 48 Understanding primary liver cancer Chemotherapy 49 Sorafenib is licensed and doctors in the UK can prescribe it. The National Institute for Health and Care Excellence (NICE) advises the NHS on which cancer drugs and treatments to use. It has not recommended sorafenib as a treatment for people with HCC. Neither has the Scottish Medicines Consortium (SMC), which is a similar organisation to NICE. In England, sorafenib is usually available to people with HCC through the Cancer Drugs Fund. In the rest of the UK, your cancer doctor may apply for it as an individual funding request on your behalf. We can send you more information about the Cancer Drugs Fund and about what you can do if a treatment isn t available where you live. Chemotherapy Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It can be used to try and control the tumour and reduce the symptoms. It is not suitable for everyone because the liver may not be working well enough to cope with the drugs. Chemotherapy drugs may be given as injections into a vein (intravenously) or as tablets. The most commonly used chemotherapy drug is doxorubicin. Other chemotherapy drugs that may be used include: cisplatin (sometimes in combination with doxorubicin) fluorouracil (5FU) in combination with oxaliplatin. How chemotherapy is given You usually have chemotherapy as a session of treatments called cycles. Each cycle lasts a day or two followed by a rest period of a few weeks to allow the body to recover from the side effects. You usually have chemotherapy as an outpatient in the chemotherapy unit. The nurse will explain how it will be given and what to expect. They may give you the drugs into a small cannula (tube) they put into your hand or arm. Some drugs are given as a drip (infusion) over a few hours. Our booklet Understanding chemotherapy discusses the treatment and its side effects in more detail. We also have information about individual chemotherapy drugs and their side effects. MAC11917 Liver e03 p MV.indd /07/ :24:48

27 50 Understanding primary liver cancer Chemotherapy 51 Side effects Chemotherapy drugs may cause unpleasant side effects, but these can usually be well controlled with medicines and will usually go away once treatment has finished. Not all drugs cause the same side effects and some people may have very few. You can talk to your doctor or nurse about what to expect from the treatment that s planned for you. The main side effects are described here as well as some ways to reduce or control them. We can send you further information about many of the side effects mentioned here. Risk of infection Chemotherapy can reduce the number of white blood cells, which help fight infection. 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, which may be over 37.5 C (99.5 F) or over 38 C (100.4 F) depending on the hospital s policy follow the advice that you have 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. Bruising and bleeding Chemotherapy can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. If you develop any unexplained bruising or bleeding, such as nosebleeds, bleeding gums, blood spots or rashes on the skin, contact your doctor or the hospital straight away. Anaemia (reduced number of red blood cells) Chemotherapy may reduce the number of red bloods cells (haemoglobin) in your blood. A low level of red blood cells is known as anaemia, and can make you feel very tired and lethargic. You may also become breathless. Anaemia can be treated with blood tranfusions. This should help you to feel more energetic and ease the breathlessness. Mouth problems Chemotherapy can cause mouth problems such as a sore mouth, mouth ulcers or infection. Drinking plenty of fluids, and cleaning your teeth regularly and gently with a soft toothbrush can help to reduce the risk of this happening. Your chemotherapy nurse will explain how to look after your mouth to reduce the risk of problems. They can give you mouthwashes, medicines and gels to help. MAC11917 Liver e03 p MV.indd /07/ :24:48