Understanding Cancer in the Liver - A guide for people affected by primary liver cancer or secondary cancer in the liver
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Understanding Cancer in the Liver A guide for people affected by primary liver cancer or secondary cancer in the liver Cancer information www.cancercouncil.com.au
Understanding Cancer in the Liver A guide for people affected by primary liver cancer or secondary cancer in the liver First published October 2007. This edition July 2014. © Cancer Council Australia 2014. ISBN 978 1 925136 32 6. Understanding Cancer in the Liver is reviewed approximately every two years. Check the publication date above to ensure this copy is up to date. Acknowledgements This edition has been developed by Cancer Council NSW on behalf of all other state and territory Cancer Councils as part of a National Publications Working Group initiative. We thank the reviewers of this booklet: A/Prof Vincent Lam, Sydney Medical School Hepatobiliary, Pancreatic and Transplant Surgeon, Westmead Hospital, NSW; Prof Peter Angus, Medical Director, Director of Gastroenterology and Hepatology and Professorial Fellow, Austin Hospital and University of Melbourne, VIC; Jenny Berryman, Consumer; Ann Bullen, Cancer Care Coordinator, Royal Brisbane and Women’s Hospital, QLD; Prof Jonathan Fawcett, Director, Queensland Liver Transplant Service, Professor of Surgery, University of Queensland, QLD; Dr Dan Madigan, Interventional Radiologist, Royal Adelaide Hospital, SA; Dr Monica Robotin, Medical Director, Cancer Council NSW; and Dr Simon So, Interventional Radiologist, Westmead Hospital, NSW. Some of the information from previous editions of this booklet was sourced from Macmillan Cancer Care, UK. Editor: Laura Wuellner. Designer: Eleonora Pelosi. Printer: SOS Print + Media Group. Note to reader Always consult your doctor about matters that affect your health. This booklet is intended as a general introduction to the topic and should not be seen as a substitute for medical, legal or financial advice. You should obtain appropriate independent professional advice relevant to your specific situation and you may wish to discuss issues raised in this book with them. All care is taken to ensure that the information in this booklet is accurate at the time of publication. Please note that information on cancer, including the diagnosis, treatment and prevention of cancer, is constantly being updated and revised by medical professionals and the research community. Cancer Council Australia and its members exclude all liability for any injury, loss or damage incurred by use of or reliance on the information provided in this booklet. Cancer Council NSW Cancer Council is the leading cancer charity in NSW. It plays a unique and important role in the fight against cancer through undertaking high-quality research, advocating on cancer issues, providing information and services to the public and people with cancer, and raising funds for cancer programs. This booklet is funded through the generosity of the people of NSW. To make a donation to help defeat cancer, visit Cancer Council’s website at www.cancercouncil.com.au or phone 1300 780 113. Cancer Council NSW 153 Dowling Street, Woolloomooloo NSW 2011 Cancer Council Helpline 13 11 20 Telephone 02 9334 1900 Facsimile 02 9334 1741 Email feedback@nswcc.org.au Website www.cancercouncil.com.au ABN 51 116 463 846
Introduction This booklet has been prepared to help you understand more about cancer that affects the liver. Many people feel shocked and upset when told they have primary liver cancer or secondary cancer in the liver. We hope this booklet will help you, your family and friends understand how cancer in the liver is diagnosed and treated. We also include information about support services. We cannot give advice about the best treatment for you. You need to discuss this with your doctors. However, we hope this information will answer some of your questions and help you think about other questions to ask your treatment team. This booklet does not need to be read from cover to cover – just read the parts that are useful to you. Some medical terms that may be unfamiliar are explained in the glossary. You may also like to pass this booklet to your family and friends for their information. If you’re reading this book for someone who doesn’t understand English, let them know that Cancer Council Helpline 13 11 20 can arrange telephone support in different languages. They can also call the Translating and Interpreting Service (TIS) direct on 13 14 50.
Contents What is cancer?................................................................. 4 The liver.............................................................................. 6 Key questions.................................................................. 8 What is primary liver cancer?.............................................................. 8 What are the risk factors?................................................................... 8 Can primary liver cancer spread?....................................................10 What is secondary cancer in the liver?.............................................11 What are the symptoms?................................................................12 How common is cancer in the liver?................................................13 Diagnosis....................................................................... 14 Blood tests.......................................................................................... 14 Scans (imaging tests).......................................................................... 15 Biopsy...........................................................................................18 Further tests........................................................................................ 20 Staging cancer in the liver................................................................... 21 Prognosis............................................................................................ 22 Which health professionals will I see?................................................. 23 Key points........................................................................................... 25 Making treatment decisions........................................... 26 Talking with doctors............................................................................ 26 A second opinion................................................................................ 27 Taking part in a clinical trial................................................................. 27 Treatment......................................................................... 28 Surgery................................................................................................ 28
Tumour ablation................................................................................... 34 Chemotherapy..................................................................................... 36 Biological therapy................................................................................ 38 Radioembolisation (selective internal radiation therapy)..................... 39 Endoscopic stent placement............................................................... 40 Palliative treatment.............................................................................. 41 Key points........................................................................................... 42 Looking after yourself..................................................... 43 Relationships with others.................................................................. 44 Life after treatment.............................................................................. 45 Seeking support.............................................................. 47 Practical and financial help............................................................... 47 Talk to someone who’s been there...................................................... 47 Caring for someone with cancer................................... 49 Useful websites...........................................................50 Question checklist........................................................... 51 Glossary........................................................................... 52 How you can help............................................................ 56
What is cancer? Cancer is a disease of the cells, which are the body’s basic building blocks. The body constantly makes new cells to help us grow, replace worn-out tissue and heal injuries. Normally, cells multiply and die in an orderly way. Sometimes cells don’t grow, divide and die in the usual way. This may cause blood or lymph fluid in the body to become abnormal, or form a lump called a tumour. A tumour can be benign or malignant. Benign tumour – Cells are confined to one area and are not able to spread to other parts of the body. This is not cancer. Malignant tumour – This is made up of cancerous cells, which have the ability to spread by travelling through the bloodstream or lymphatic system (lymph fluid). How cancer starts Normal cells Abnormal Angiogenesis cells Boundary Lymph vessel Blood vessel Normal cells Abnormal cells Abnormal cells Malignant or multiply invasive cancer 4 Cancer Council
The cancer that first develops in a tissue or organ is called the primary cancer. A malignant tumour is usually named after the organ or type of cell affected. A malignant tumour that has not spread to other parts of the body is called localised cancer. A tumour may invade deeper into surrounding tissue and can grow its own blood vessels (angiogenesis). If cancerous cells grow and form another tumour at a new site, it is called a secondary cancer or metastasis. A metastasis keeps the name of the original cancer. For example, liver cancer that has spread to the bones is still called liver cancer, even though the person may be experiencing symptoms in the bones, while breast cancer that has spread to the liver is still called breast cancer. How cancer spreads Primary cancer Local invasion Angiogenesis – tumours grow their own blood vessels Lymph vessel Metastasis – cells invade other parts of the body via blood vessels and lymph vessels What is cancer? 5
The liver The liver is the largest organ inside the body. It is on the right side of the tummy area (abdomen), next to the stomach. It is found under the ribs, just beneath the right lung and the diaphragm. The diaphragm is a sheet of muscle that separates the chest from the abdomen. The liver is made up of two sections: the right and left lobes. Blood flows into the liver from the hepatic artery and the portal vein. Blood from the hepatic artery carries oxygen, while blood from the portal vein carries nutrients and waste products (toxins). The liver performs several important functions including: • producing bile to help dissolve fat so it can be easily digested • converting sugar and fat into energy • storing nutrients • making proteins and chemicals the body needs • helping the blood to clot • breaking down substances, such as alcohol and drugs, and getting rid of waste products. Unlike other internal organs, the liver can usually repair itself. It can function even if only a small part of it is working. After surgery or injury, a healthy liver can grow back to normal size in 6–8 weeks. Bile is made in the liver and is stored in the gall bladder. When needed, bile is released into the bowel to help break down fats. 6 Cancer Council
The liver Lung Hepatic vein Diaphragm Liver (left) Liver (right) Stomach Gall bladder Hepatic artery Pancreas Common bile duct Portal vein The liver 7
Key questions Q: What is primary liver cancer? A: This is when a malignant tumour starts in the liver. There are different types of primary liver cancer: • Hepatocellular carcinoma (HCC) – starts in the hepatocytes, the main cell type in the liver. HCC, also called hepatoma, is the most common type of primary liver cancer. • Cholangiocarcinoma – starts in the cells lining the bile ducts, which connect the liver to the bowel and the gall bladder. It is also called bile duct cancer. • Angiosarcoma – a rare type of liver cancer starting in the blood vessels. It usually occurs in people over 70. Q: What are the risk factors? A: The majority of liver cancer cases are related to long-term (chronic) infection caused by the hepatitis B or C viruses. Other causes of liver cancer aren’t always known, but some factors that increase the risk include: • liver scarring (cirrhosis) due to: hepatitis B or C, alcohol, fatty liver disease or genetic disorders, such as haemochromatosis or alpha 1-antitrypsin deficiency • type 2 diabetes • high alcohol consumption • eating a high-fat diet and/or being overweight or obese • smoking tobacco • exposure to certain chemicals or substances (such as aflatoxins, vinyl chloride and arsenic). 8 Cancer Council
The link between hepatitis and liver cancer About eight in ten of HCC cases worldwide are attributable to chronic hepatitis infection. In Australia, hepatitis C and hepatitis B infections are the biggest known risk factors for primary liver cancer. It’s estimated that more than a third of the world’s population has been infected with the hepatitis B virus. People can spread either type of hepatitis without knowing they’re infected. Hepatitis is spread by contact with infected blood, semen, or other body fluids. Spread can occur through sex with an infected partner or sharing personal items, such as razors or toothbrushes, with an infected person. The most common way that hepatitis B is spread is during birth, from mother to baby. Although the infection usually goes away (is cleared) in adults, if hepatitis is acquired in infancy or early childhood, it can lead to chronic hepatitis infection. Chronic infection with hepatitis B affects the liver cells (hepatocytes). This stimulates the body’s immune system to attack the virus. The immune response causes liver inflammation, which can lead to ongoing damage and can cause liver cancer. People with chronic hepatitis infection often develop cirrhosis, which increases the risk of liver cancer. Key questions 9
To reduce the spread of hepatitis B and the incidence of primary liver cancer, all at-risk people should be vaccinated against the virus. These include: • migrants from South-East Asia, Africa and the Pacific Islands • sexually active partners of infected individuals • people in the same household as someone with hepatitis B • recipients of blood products • infants and children (as part of Australia’s national immunisation program). Vaccination is not effective if you are already infected with the virus. In this case, you need regular monitoring to ensure you don’t develop health problems, including liver cancer. If you are concerned about hepatitis, contact your doctor for more information. Q: Can primary liver cancer spread? A: If primary liver cancer isn’t found in its early stages, or if treatment is unsuccessful, it can spread. It typically spreads to other parts of the liver first, then the lungs, lymph nodes and bones. The two most common ways that liver cancer spreads are through the bloodstream or the lymphatic system. The lymphatic system is part of the body’s defence system against infection and disease. It includes a network of thin lymph vessels, which carry a clear fluid called lymph to and from tissues, before emptying it into the bloodstream. 10 Cancer Council
Q: What is secondary cancer in the liver? A: Secondary cancer in the liver is cancer that started in another part of the body but has spread (metastasised) to the liver. Most cancers can spread to the liver. Cancers that start in the digestive system (including cancers of the oesophagus, stomach, pancreas and large bowel) are most likely to spread to the liver. This is because blood cells flow from the digestive organs through the liver, and cancerous blood cells can get stuck (lodge) in the liver. Melanoma and cancers of the breast, ovary, kidney and lung can also metastasise to the liver. Secondary cancer in the liver is sometimes found at the same time that the primary cancer is diagnosed. However, it can also be diagnosed soon after the primary cancer, or it may be diagnosed months or years after someone has been treated for primary cancer. It could also be diagnosed before the primary cancer is found. If other tests don’t show what the primary cancer is, this is called cancer of unknown primary (CUP). If you have secondary cancer in the liver, it may be useful to read information about the primary cancer, or about CUP if the primary cancer is unknown. Call 13 11 20 or go to your local Cancer Council website to access relevant publications. Key questions 11
Naming secondary cancers A secondary cancer is named cancer with liver secondaries, after the primary site where colorectal metastasis, it began. metastatic bowel cancer or advanced bowel cancer. For example, bowel cancer that has spread to the liver is still In this booklet, we use the term called bowel cancer. To indicate ‘secondary cancer in the liver’ that the cancer has spread, to refer to any cancer type that doctors may call it bowel has spread to the liver. Q: What are the symptoms? A: Primary liver cancer doesn’t tend to cause symptoms in the early stages, but they may appear as the cancer grows or becomes advanced. Secondary liver cancers may cause similar symptoms. Symptoms can include: • weakness and tiredness (fatigue) • pain in the upper right side of the abdomen • severe abdominal pain • appetite loss and feeling sick (nausea) • weight loss • yellowing of the skin and eyes (jaundice) • pale bowel motions • swelling of the abdomen (ascites) • fever. 12 Cancer Council
Q: How common is cancer in the liver? A: Primary liver cancer is one of the less common cancers in Australia. About 1400 people are diagnosed with it every year. It is more than twice as common in men, and the average age at diagnosis is 66. The incidence of primary liver cancer is increasing, mainly because the rate of hepatitis infection is increasing, and more people are developing serious damage from fatty liver disease. HCC, the most common type of primary liver cancer, is common in Asia, Mediterranean countries and Africa due to the high rates of chronic hepatitis B infection. In Australia, it is more common in migrants from Vietnam, Hong Kong and Korea – countries where hepatitis B infection is prevalent. Secondary cancer in the liver is much more common than primary liver cancer. It occurs about 20 times more often, with about 28,000 people in Australia diagnosed every year. Key questions 13
Diagnosis Primary liver cancer and secondary cancer in the liver are diagnosed using a number of tests. These include blood tests and scans. Tissue examination (biopsy) is rarely done. Blood tests You will probably have a blood test to check how well the liver is working (liver function) and how well your blood clots. You may also have liver function tests before, during and after treatment. If primary liver cancer is suspected, you will have blood tests to check for hepatitis B or C and various genetic problems. You may need a blood test to check the level of certain chemicals known as tumour markers, which are produced by cancer cells and can help identify some types of cancer. The tumour markers used to diagnose primary liver cancer include: • alpha-fetoprotein (AFP) • cancer antigen 19-9 (CA19-9) • carcinoembryonic antigen (CEA) – this is also helpful in diagnosing secondary cancer that has spread from the large bowel. Tumour markers do not rise in all people with cancer. Also, some conditions, such as pregnancy, hepatitis and jaundice, can increase tumour marker levels without cancer being present. If the markers are high due to cancer, they should fall if the treatment works. After blood tests, other tests will need to be done to confirm your diagnosis of primary liver cancer or secondary cancer in the liver. 14 Cancer Council
Scans (imaging tests) You will have at least one of these scans, but you may have more than one if the doctor needs further information about the cancer. Ultrasound An ultrasound is the most common scan used to look for primary liver cancer. It’s often used to monitor high-risk patients, such as people with cirrhosis. The scan uses soundwaves to create a picture of a part of your body. It can show the size and location of abnormal tissue in your liver. During the ultrasound, you will lie down and a gel will be spread over your abdomen to help conduct the soundwaves. A small paddle-shaped device called a transducer is then moved over the area. It creates soundwaves that echo when they meet something dense, like an organ or tumour. The soundwaves are sent to a computer and turned into a picture. This process takes about 15 minutes and is painless. If a solid lump is found, the scan will help show whether it is cancer. Non-cancerous (benign) tumours in the liver can also be found during an ultrasound. You will be asked to not eat or drink for about four hours before the ultrasound. Diagnosis 15
CT scan The CT (computerised tomography) scan is a type of x-ray that takes three-dimensional pictures of several organs at the same time. It helps doctors make a diagnosis and see if the cancer has spread. It can also help doctors plan surgery. The test usually takes 10–30 minutes. You will need to drink a liquid dye (contrast) or have an injection of contrast into a vein beforehand to make the pictures clearer. The injection may be uncomfortable and the dye may briefly make you feel hot and sweaty. Some people can’t have this scan because of poorly functioning kidneys or an allergy to the contrast (see below). In this case, a different scan will be arranged. You will lie on a table while the CT scanner, which is large and round like a doughnut, takes the pictures. The scan itself is painless. Some people are allergic to the contrast used in a CT or MRI scan. If you have any known allergies, let your doctor know in advance. You should also tell your health care team if you have a pacemaker or other metallic device in your body. These may interfere with the MRI scan. MRI scan An MRI (magnetic resonance imaging) scan uses both a magnetic field and radio waves to take detailed cross-sectional pictures of the body. 16 Cancer Council
These show the extent of the tumour and whether it is affecting the main blood vessels around the liver. The pictures are taken while you lie on a table that slides into a metal cylinder – a large magnet – that is open at both ends. You may be given an injection of contrast into your veins to make the pictures clearer. An MRI is painless but some people find that lying in the cylinder is too confined (claustrophobic) and noisy. If you feel uncomfortable, let your doctor or nurse know. They can give you medication to ease this feeling or earplugs to reduce the noise level. You can also usually take someone into the room with you for company. I had various scans when I was diagnosed with primary liver cancer. At first, I found the MRI was frightening, going into the cylinder head first and having to hold my breath. But now when I have this scan during check-ups, I count to myself. This helps me feel more in control. Robyn PET-CT scan A positron emission tomography (PET) scan combined with a CT scan (see page 16) is a type of imaging test available at some major metropolitan hospitals. It produces a three-dimensional colour image that may show where cancers are in the body. PET scans are most commonly used for secondary liver cancers, such as bowel cancer or melanoma that have spread to the liver. They are not often used to detect primary liver cancers. Diagnosis 17
For the PET scan, you will be injected in the arm with a glucose solution containing a small amount of radioactive material. It takes 30–90 minutes for the solution to go through your body. During this time you will be asked to sit quietly. Your whole body will then be scanned for high levels of radioactive glucose. Cancer cells show up brighter on the scan pictures because they are more active and take up more of the glucose solution than normal cells. During PET scans, you will be exposed to radioactive material, but doses are low and generally not harmful. The nuclear medicine staff who perform the scan will discuss this with you. Biopsy A biopsy involves removing a small amount of tissue to examine under a microscope. This can sometimes show if the cancer in your liver is a primary or secondary cancer. A biopsy is usually done for: • people without liver cirrhosis • people who have cirrhosis but have other inconclusive or abnormal test results • before surgery or other treatment, if there is uncertainty about the diagnosis. A biopsy may not be needed if you are able to have a transplant (see page 35). 18 Cancer Council
Before a biopsy, you may have a test to check how well your blood clots. This is because the liver contains many blood vessels. Biopsy is done either by fine needle aspiration or laparoscopy: Fine needle aspiration You will have a local anaesthetic to numb the area, then a thin needle is passed through the skin into the tumour. An ultrasound or CT scan will be done at the same time to help the doctor guide the needle. Cells are drawn into the needle and removed. Afterwards, you will stay in hospital for a few hours. If there is a high risk of bleeding, you may need to stay overnight. Sometimes the results of this biopsy are not clear and it will need to be repeated. Laparoscopy This operation is also called keyhole surgery. It allows the doctor to look at the liver and surrounding organs using a thin tube containing a light and a camera (a laparoscope). It is often done if your doctor thinks the cancer may be in other areas of the body. A laparoscopy is done under general anaesthetic. A small cut is made in your lower abdomen for the laparoscope to be inserted. During the procedure, carbon dioxide gas is used to increase the size of your abdomen to make space for the surgeon to see. Diagnosis 19
The surgeon can take tissue samples, then after the laparoscope is removed, the small cut is closed with a couple of stitches. The most common risks of laparoscopy are wound infection and bruising. There is a slight risk of bleeding, but this is rare. The carbon dioxide can also cause shoulder pain and wind for a few days. Usually you will need to stay in hospital overnight for monitoring. Some people need to stay in hospital for a few days. Further tests If you have not been diagnosed with cancer and the tests described on pages 14–19 show you have secondary cancer in the liver, you may need further tests to find out where the primary cancer started. Some people have: • an examination of the bowel (colonoscopy), the stomach (endoscopy) and, for women, the breasts (mammogram) • blood tests to look for different tumour markers • a urine test to check the kidneys or bladder • other imaging tests, such as a PET-CT scan, to see different parts of the body. In other cases, it will be clear where the primary cancer began, as you may have been diagnosed and treated for cancer in the past. This is common for people who have bowel cancer. 20 Cancer Council
ICG test An indocyanine green During an ICG test, green dye (ICG) test may be done for is injected into the blood. Over people who have primary liver the next 15 minutes, readings cancer and cirrhosis. The test are taken using a probe placed helps surgeons assess how well on the finger. The probe the liver is functioning and measures how quickly the determine if surgery is a liver clears the dye from the treatment option. bloodstream. ICG may be done before If the dye is cleared quickly, surgically removing part of the this shows that the liver is liver. This is because healthy working well. However, if it is people can withstand an slow, it may be too dangerous operation (the liver may regrow to remove parts of the liver. In during recovery), but a person this case, the medical team with cirrhosis has liver damage will discuss other available that can impair liver regrowth. treatment options. Staging cancer in the liver The tests described in this chapter will show whether you have: • primary liver cancer • primary liver cancer that has spread • secondary cancer that has spread to the liver from elsewhere. Working out whether the cancer has spread from the primary cancer site – and if so, how far – is called staging. This helps your doctor recommend the best treatment for you. Diagnosis 21
Ask your doctor to explain more about the stage of the cancer and how it relates to your diagnosis and treatment. The different stages of cancer are based on how far away from the original tumour site the cancer is found. Different types of cancer have different staging systems. Secondary cancers in the liver are staged using the system relating to the primary cancer. In primary liver cancer, generally stage 1 and stage 2 tumours are confined to the liver. Usually stage 3 and stage 4 describes cancer that has spread away from liver. Prognosis Prognosis means the expected outcome of a disease. You may wish to discuss your prognosis with your doctor, but it is not possible for any doctor to predict the exact course of your disease. Factors used to assess your prognosis include: • test results • the type of cancer, where it is in the body, and the rate of growth • the treatment available • how well you respond to treatment • your age, fitness and medical history. Doctors often use numbers (statistics) when considering someone’s prognosis. Statistics reflect the typical outcome of disease in large numbers of patients. While statistics give doctors a general idea about a disease, they won’t necessarily reflect your situation. 22 Cancer Council
Liver transplantation or surgical resection (removal of the diseased section of the liver) may be an option to treat some people with primary liver cancer. These procedures may offer the chance of a cure. Other treatments for primary liver cancer and secondary cancer in the liver may enable you to live for much longer than if you were to have no treatment. Which health professionals will I see? Your general practitioner (GP) will arrange the first tests to assess your symptoms. If these tests do not rule out cancer, you will probably be referred to a gastroenterologist who will organise further tests for you and advise you about treatment options. You may need to see other specialists, such as a surgeon or a medical oncologist, who can discuss the different types of treatment with you. A range of health professionals who specialise in different aspects of your treatment will care for you. This is called a multidisciplinary (MDT) team, and includes doctors, nurses and allied health professionals, such as a physiotherapist and dietitian. Some people in non-metropolitan areas will have to travel to appointments with specialists. Your GP can be kept informed of all your test results and treatment. They can answer questions you have in-between appointments with specialists. Diagnosis 23
Health professional Role a doctor who specialises in surgery of the hepatobiliary surgeon liver and its surrounding organs a specialist in diseases of the digestive gastroenterologist system, including the liver a gastroenterologist who specialises in hepatologist diseases of the liver prescribes and coordinates the course of medical oncologist chemotherapy help to diagnose cancer by interpreting radiologist and nuclear results of diagnostic tests, and delivers some medicine specialists treatments, including those with chemical compounds cancer care provide care, information and support coordinators and throughout your treatment, and administer nurses drugs, including chemotherapy social worker, provide information and support with physiotherapist, practical matters, such as mobility, and link occupational therapist you to community support services determines if you are getting enough dietitian nutrients, and recommends an eating plan for you to follow during treatment and recovery assists you with symptom management and palliative care team emotional support for you and your family 24 Cancer Council
Key points • There are a number of tests a colonoscopy or endoscopy used to diagnose primary to find out where the primary liver cancer or secondary cancer started. cancer in the liver. • All of these tests will help • Blood tests show how the your doctor work out the best liver is working and whether treatment options for you and there are tumour markers in whether it may be possible to the blood that might indicate try and cure the cancer. cancer in the liver. • Your doctor may tell you what • Imaging tests include a stage the cancer is at. This range of scans that allow describes how far the cancer doctors to see your organs has spread in your body. and determine whether there are any abnormal tissue or • You may wonder about the tumours. Sometimes non- likely outcome of the disease cancerous (benign) lumps (the prognosis). There are are found. many factors in considering your prognosis, such as test • A biopsy is when tissue is results, the type of cancer you removed for examination have and your medical history. under a microscope. This is not done very often. If it is • You will see many health done, it is done using a fine professionals when you have needle or during surgery. tests and treatment. These include specialists, cancer • If you have secondary care coordinators, nurses, and cancer in the liver, you may other health professionals, also need tests such as such as social workers. Diagnosis 25
Making treatment decisions Sometimes it is difficult to decide on the type of treatment to have. You may feel that everything is happening too fast. Check with your doctor how soon your treatment should start, and take as much time as you can before making a decision. Understanding the disease, the available treatments and possible side effects can help you weigh up the pros and cons of different treatments and make a well-informed decision that’s based on your personal values. You may also want to discuss the options with your doctor, friends and family. You have the right to accept or refuse any treatment offered. Some people with more advanced cancer choose treatment even if it only offers a small benefit for a short period of time. Others want to make sure the benefits outweigh the side effects so that they have the best possible quality of life. Talking with doctors When your doctor first tells you that you have cancer, you may not remember the details about what you are told. Taking notes or recording the discussion may help. Many people like to have a family member or friend go with them to take part in the discussion, take notes or simply listen. If you are confused or want clarification, you can ask questions – see page 51 for a list of suggested questions. If you have several questions, you may want to talk to a nurse or ask the office manager if it is possible to book a longer appointment. 26 Cancer Council
A second opinion You may want to get a second opinion from another specialist to confirm or clarify your doctor’s recommendations or reassure you that you have explored all of your options. Specialists are used to people doing this. Your doctor can refer you to another specialist and send your initial results to that person. You can get a second opinion even if you have started treatment or still want to be treated by your first doctor. You might decide you would prefer to be treated by the doctor who provided the second opinion. Taking part in a clinical trial Your doctor or nurse may suggest you take part in a clinical trial. Doctors run clinical trials to test new or modified treatments and ways of diagnosing disease to see if they are better than current methods. For example, if you join a randomised trial for a new treatment, you will be chosen at random to receive either the best existing treatment or the modified new treatment. Over the years, trials have improved treatments and led to better outcomes for people diagnosed with cancer. It may be helpful to talk to your specialist or clinical trials nurse, or to get a second opinion. If you decide to take part, you can withdraw at any time. For more information, call the Helpline for a free copy of Understanding Clinical Trials and Research or visit www.australiancancertrials.gov.au. Making treatment decisions 27
Treatment Your treatment will depend on whether you have primary liver cancer or secondary cancer in the liver; the size and spread of the cancer; and whether any other disease, such as cirrhosis, affects your liver. Your doctor will also consider your age and general health, as well as the options available at your hospital. • Primary liver cancer – The most common treatments are tumour ablation using heat (radiofrequency or microwave ablation) and chemotherapy delivered directly into the cancer, known as transarterial chemoembolisation (TACE). Surgery is used for about 5% of people. • Secondary cancer in the liver – The main treatments are chemotherapy or a combination of surgery and chemotherapy. Surgery During surgery, part of the liver that contains cancer is removed. Primary liver cancer – Only a small number of people are suitable for surgery. Your ability to have an operation depends on the size, number and position of the tumours, how much of the liver is affected and whether you have cirrhosis. Operating on patients with cirrhosis is complicated because the liver may not function well or regrow afterwards. For some people, it is not possible to remove part of the liver. These patients may be considered for a transplant. This means the whole liver is replaced (see page 31). 28 Cancer Council
Secondary cancer in the liver – Surgery may be possible if there is enough healthy liver and the cancer hasn’t spread to other parts of the body where it can’t be removed (such as the bones). Liver transplantation isn’t an option. Some people need surgery for both the secondary cancer in the liver and the primary cancer. These operations may be done separately or at the same time. The hardest part of the operation was knowing how much progress I had to make after the operation. The nurses wrote some goals for me: pain control, breathing exercises, tubes out, getting out of bed. Earl Partial hepatectomy Surgery to remove part of the liver is called a partial hepatectomy. The amount of liver removed depends on your circumstances. In some cases, the surgeons will remove one half of your liver (hemihepatectomy). In other cases they will only need to cut out a small section (segmentectomy). The gall bladder is also taken out, as it is attached to the liver on the border between the right and left sides. Occasionally, part of the diaphragm muscle may be removed. The liver can repair itself easily if it is not damaged. The portion of the liver that remains after resection will start to grow, even if up to three-quarters of it is removed. The liver will usually be back to normal size within a few months, although its shape may be slightly changed. Treatment 29
Surgical approaches In the majority of liver abdomen and use a camera operations, a large cut is made to view the organs. in the upper abdomen. This is called an open approach. While recovery is faster after keyhole surgery, you will still However, it’s becoming be in hospital for at least one more common for some liver night and you will need pain operations to be done with medication. a smaller incision (known as keyhole or laparoscopic Keyhole surgery is not available surgery). Your surgeon in all hospitals. Talk to your will make small cuts in the surgeon for information. Two-stage surgery (two-stage hepatectomy) People with tumours in both sides of the liver sometimes need two operations: 1. A partial hepatectomy is done to remove tumours from one side of the liver. Sometimes this operation is combined with tumour ablation (see page 34) or removal of the primary tumour. The patient is given about two months to recover. During this time, the liver may regrow. Before a second operation, the size of the liver will be checked. 2. If enough of the liver has regrown, the tumours in the second side will be removed during another partial hepatectomy. 30 Cancer Council
Liver transplantation Transplantation involves removing the entire liver and replacing it with a liver from another person (a donor). There is a possibility that this treatment could cure primary liver cancer, but it is generally only used in people with small tumours. Several factors are taken into account before someone is eligible for a liver transplant. Their overall health must be good, they cannot smoke or take illegal drugs, and they must have stopped drinking alcohol. Donor livers are scarce, and waiting for a suitable liver may take many months or years. During this time, the cancer may continue to grow. As a result, most people have other treatment to control the cancer while they wait for a donor. If you have a liver transplant, it may take 3–6 months to recover. You will probably find it takes a while to regain your energy. You will also be given medications to reduce the chance of infection and stop the body rejecting the new liver (immunosuppressants). You will need to take immunosuppressants for the rest of your life. After you return home, you will need frequent check-ups to monitor your health and the success of the transplant. There is no cost for having a liver transplant in Australia, when it is performed in a public hospital. Treatment 31
After surgery You will spend 5–10 days in hospital after a partial hepatectomy, and up to three weeks in hospital following a transplant. If you have a laparoscopy, the recovery time is shorter – you should allow about one week to recover before returning to your usual activities. Drips and drains – Different tubes will be in place to drain post-operative fluids, urine and bile. You will also have a drip (intravenous tube) giving you fluids and nourishment, as you may not be able to eat or drink for a few days. When you are able to eat, you will be given clear fluids at first, and then solid foods. Pain relief – As with many types of surgery, you may experience pain, as well as breathing difficulties and nausea. The hospital staff will try to make you comfortable by giving you pain relief. You may have a tube called an epidural catheter placed in your back to deliver pain medication, or you may be given what is known as an intravenous patient-controlled analgesic (PCA) system. The PCA system allows you to control the pain by pressing a button to give yourself a dose of pain relief when you need it. It is not possible to give yourself an overdose of medication using a PCA system. Let your doctor or nurse know if the pain control is not working, as it may be possible to adjust the medication or dosage. 32 Cancer Council
Fatigue – You will probably feel quite tired and weak after the operation, but this should improve within a few weeks. Mobility – A physiotherapist can help with your recovery by giving you exercises to improve your breathing, strength and ability to walk (mobility). Check-ups – After you return home, you will need frequent check-ups to monitor your health and the success of the surgery. Your doctor will tell you how often you should have check-ups. • Start doing light exercise as • If you have an incision, follow soon as you are able to. Try your health care team’s walking slowly or standing instructions about cleaning while doing chores. the area. Contact your doctor if it becomes red or inflamed. • Wait six weeks and consult your doctor before doing • Avoid alcohol for at least vigorous exercise, such as one month and only drink running, weight-lifting or alcohol in moderation after playing sport. this time. If you have cirrhosis, you must not consume any • If you are taking strong (opioid) alcohol. Your medical team pain-killers, follow your will talk to you about this. doctor’s advice about driving. I had an 11 cm long hepatocellular carcinoma, but I was lucky that the tumour was operable. After surgery, the physiotherapy exercises helped my recovery. Robyn Treatment 33
Tumour ablation Tumour ablation is treatment that destroys a tumour. Ablation works best when there are only one or two small tumours (less than 3 cm in size). It is used most commonly for small primary liver cancers, and it is rarely used for secondary cancer in the liver. The most common ablation treatments use radio waves (radiofrequency) or microwaves to heat and destroy cancer cells. This can be done with a needle inserted through the skin (percutaneously) or with a surgical cut. Less common types of tumour ablation include alcohol injection and cryotherapy (see opposite). Percutaneous ablation During this procedure, a CT or ultrasound scan is used to guide a fine needle through the skin and into the tumour. Radio waves or microwaves are passed through the needle and into the tumour to destroy it. This is done in the x-ray department or operating theatre while you are under local or general anaesthetic. It takes 1–3 hours, but you will usually stay in hospital overnight. Afterwards you will probably feel quite drowsy. Side effects, which include pain, nausea or fever, can be managed with medication. Ablation with surgery If the tumours are close to the surface of the liver, you may have an operation to avoid damage to the diaphragm muscle or 34 Cancer Council
nearby organs. A cut is made in the skin to access the liver, and probes are inserted to do the ablation. Recovery from ablation with surgery is usually similar to liver surgery (see pages 32–33). Alcohol injection During alcohol injection, pure alcohol is inserted directly into a tumour to destroy cancer cells. It isn’t available at all hospitals, but is occasionally used if other forms of ablation aren’t possible. Treatment is given under local anaesthetic, and an ultrasound is used to guide the needle into the tumour. You may be given more than one injection over several sessions. You may have some pain or a fever after the alcohol injection, but these side effects can be managed with medication. Cryotherapy Cryotherapy (or cryosurgery) is a procedure used to freeze and kill cancer cells, but it is not widely available. You will be given a general anaesthetic, then a cut will be made in your abdomen. A probe is inserted through the cut into the centre of the tumour. The probe releases liquid nitrogen that freezes and kills the cancer cells. Cryotherapy takes about 60 minutes, and recovery is similar to having surgery (see pages 32–33). Treatment 35
Chemotherapy Chemotherapy is the use of drugs to kill, shrink or slow the growth of tumours. Depending on the type of cancer you have, you will either have chemotherapy that spreads throughout your body (systemically) or goes directly into the tumour (TACE). Systemic chemotherapy Systemic chemotherapy is generally not used to treat primary liver cancer unless the cancer has spread to other parts of the body. It may occasionally be used to shrink a secondary cancer enough so that it can be operated on later. It can also be used as palliative treatment to slow down cancer growth and reduce pain. Chemotherapy may also be given following other treatment, such as cryotherapy or surgery, to get rid of any remaining cancer cells. This is called adjuvant chemotherapy. If given systemically, you may have intravenous chemotherapy (through a drip) or tablets over weeks or months. Systemic chemotherapy can cause side effects because the drugs circulate through the whole body and affect normal, healthy cells. Whether or not you have chemotherapy depends on factors such as your overall health, liver function, and if you have advanced cirrhosis. 36 Cancer Council
Transarterial chemoembolisation (TACE) Chemoembolisation, or TACE, is a way of delivering chemotherapy directly into a primary cancer. By targeting the tumour directly, stronger drugs can be used without causing many of the side effects of systemic chemotherapy. TACE is rarely used for secondary cancers. You will be given a local anaesthetic before TACE, and possibly some medication to relax (a sedative). During treatment, chemotherapy drugs are injected through a thin tube (catheter) that has been inserted into the hepatic artery. Tiny plastic beads or soft, gelatine sponges may be placed in the smaller arteries that lead to the tumour. This blocks the arteries, keeping the chemotherapy in the tumour and starving the cancer of oxygen and nutrients. Usually treatment is given only once, or once every few months. It is done in the hospital x-ray department. After each TACE treatment, you will need to remain lying down for about four hours. You may also need to stay in hospital overnight or for a few days. Side effects of chemotherapy The side effects of chemotherapy vary, depending on if you have systemic chemotherapy or TACE. Side effects of systemic chemotherapy depend on the drugs used. Temporary side effects may include: • nausea and loss of appetite • tiredness Treatment 37
• hair loss and skin changes • tingling or numbness in fingers and toes • mouth sores • an increased risk of developing infections. After chemoembolisation (TACE), it is common to develop a fever the next day, but this usually passes quickly. Other side effects, such as pain, are less common, but can be severe. You will be given medication to help control your side effects. There are many ways to manage side effects. For information, talk to your medical team or read Cancer Council’s booklet about chemotherapy. Call the Helpline on 13 11 20 for a free copy or visit your local Cancer Council website. Biological therapy Biological therapies (also called biotherapies) are a range of treatments derived from natural substances in the body, which are concentrated and purified for use as drugs. The therapies work against cancer cells by either stopping their growth and the way they function, or by helping the body’s immune system destroy them. Biotherapies may be used after or in conjunction with other treatments for primary liver cancer or secondary cancer in the liver. Side effects of biological therapies depend on the types used. Your doctor will discuss any possible side effects with you. 38 Cancer Council
Radioembolisation (selective internal radiation therapy) Radioembolisation (also known as selective internal radiation therapy or SIRT) is a type of treatment that targets liver tumours directly with high doses of internal radiation placed in tiny radioactive beads. SIRT is used for both primary and secondary cancers in the liver when the tumours can’t be removed with surgery. It’s often used if there are many small tumours spread throughout the liver. Before treatment (work-up day) – If SIRT is an option, you will have a number of tests, including an angiogram and a simulation of the treatment. An angiogram shows up the blood vessels in the liver and helps to map where the radioactive beads need to go. This test takes about 90 minutes and you will be observed for 3–4 hours afterwards. You may also have CT and lung scans, which take about an hour. If the results of these tests are good, treatment will be scheduled for about 1–2 weeks later. During treatment (delivery day) – You will have another angiogram. Afterwards, the tiny radioactive beads, which are known as SIR-Spheres®, are inserted through a catheter that leads from your groin to your liver. The procedure takes about 60 minutes and you will be monitored closely for 3–4 hours before being taken to a general ward where you will recover overnight. Treatment 39
Side effects of SIRT can include flu-like symptoms, nausea, pain and fever. These can be treated with medication, and you usually can go home within 24 hours. SIRT is not available in all hospitals, and in most states and territories you will need to fund the treatment yourself if you don’t have private health insurance. Talk to your doctor about SIRT and the costs involved. Endoscopic stent placement Sometimes cancer in the liver can obstruct the bile ducts, particularly if it started in the ducts. If this happens, bile builds up in the liver and can cause symptoms of jaundice, such as yellowish skin, itchiness, pale stools or dark urine. Your doctor may recommend that a thin tube (stent) is placed in your liver to drain the bile and ease your symptoms. The earlier the stent is inserted, the less severe the symptoms. Endoscopic stent placement is done as a day procedure. You will have a local anaesthetic and possibly a sedative to reduce discomfort. A gastroenterologist or a surgeon inserts a long, flexible tube with a camera and light on the end (endoscope) through your mouth, stomach and small bowel into the bile duct. Pictures of the area show up on a screen so that the doctor can see where to place the stent. The stent is put in via the endoscope, which is then removed. 40 Cancer Council
Recovery from endoscopic stent placement is fairly fast. Your throat may feel slightly sore for a short time and you may be kept in hospital overnight. There is a risk of infection of the bile duct and inflammation of the pancreas after stent placement – your doctor will talk to you about this. Palliative treatment Palliative treatment helps to improve people’s quality of life by reducing symptoms of cancer without trying to cure the disease. It is particularly important for people with secondary cancer. However, it is not just for end-of-life care and it can be used at different stages of cancer. Often treatment is concerned with pain relief and stopping the spread of cancer, but it also involves the management of other physical and emotional symptoms. Treatment may include chemotherapy, endoscopic stent placement or medications. Call the Helpline on 13 11 20 for free resources about palliative care and advanced cancer. The chemotherapy has stopped the secondary cancer from spreading further, but it makes me very tired. Barbara Treatment 41
Key points • The most common treatments tumour. Ablation techniques for primary liver cancer include the use of radio are radiofrequency tumour waves or microwaves to heat ablation and transarterial the tumour, cryotherapy to chemoembolisation (TACE). freeze the tumour, and alcohol injection. • The most common treatments for secondary cancer in the • Chemotherapy is medication liver are chemotherapy or a that kills or slows the combination of surgery and growth of cancer cells. It chemotherapy. is given intravenously, as tablets, or as transarterial • Surgery is used to remove chemoembolisation (TACE), tumours that are small, which delivers chemotherapy accessible and haven’t spread directly into the tumour. widely throughout the liver. • Other treatments for cancer • Some people with primary in the liver include biological liver cancer are able to have therapies and selective internal a transplant, but it can take radiation treatment (SIRT). many months before a donor These are also used when becomes available. tumours can’t be surgically removed. • After surgery, you will need a number of days in hospital to • Palliative treatment helps recover. You will be monitored improve quality of life closely during this time. by reducing symptoms. Chemotherapy, medications • Tumour ablation is localised and endoscopic stent treatment that destroys the placement are options. 42 Cancer Council
Looking after yourself Cancer can cause physical and emotional strain. It’s important to try to look after your wellbeing as much as possible. Nutrition – Eating healthy food can help you cope with treatment and side effects. A dietitian can help you manage special dietary needs or eating problems, and choose the best foods for your situation. Call Cancer Council Helpline 13 11 20 for a free copy of the Nutrition and Cancer booklet. Staying active – Physical activity may help to reduce tiredness, improve circulation and elevate mood. The amount and type of exercise you do depends on what you are used to, how you feel, and your doctor’s advice. Cancer Council’s Exercise for People Living with Cancer booklet provides more information about the benefits of exercise, and outlines simple exercises that you may want to try. Complementary therapies – These therapies are used with conventional medical treatments. You may have therapies such as massage, relaxation and acupuncture to increase your sense of control, decrease stress and anxiety, and improve your mood. Let your doctor know about any therapies you are using or thinking about trying, as some may not be safe or evidence-based. Alternative therapies are used instead of conventional medical treatments. These therapies, such as coffee enemas and magnet therapy, can be harmful. For more information, call 13 11 20 for a free copy of the Understanding Complementary Therapies booklet or visit your local Cancer Council website. Looking after yourself 43
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