Understanding Kidney Cancer. A guide for people with cancer, their families and friends.

Transcription

1 Understanding Kidney Cancer A guide for people with cancer, their families and friends.

2 Understanding Kidney Cancer A guide for people with cancer, their families and friends. First published January 2008 The Cancer Council New South Wales 2008 ISBN Acknowledgements We thank the reviewers of this booklet: Dr Manish Patel, Senior Lecturer, University of Sydney and Urological Cancer Surgeon, Westmead and Sydney Adventist Hospitals; Colleen McDonald, Urological Cancer Care Coordinator, Westmead Hospital; and Judie Hastie, Cancer Council Connect volunteer. The Cancer Council NSW wishes to acknowledge The Cancer Council Victoria for kindly permitting its Understanding Kidney Cancer publication to be adapted for this booklet. Editors: Laura Wuellner, Jenny Mothoneos and Jane Lewis Cartoons: Greg Smith The Cancer Council New South Wales The 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 the Cancer Council s website at or phone Before commencing any health treatment, always consult your doctor. This booklet is intended as a general introduction to the topic and should not be seen as a substitute for your own doctor s or health professional s advice. All care is taken to ensure that the information contained here is accurate at the time of publication. The Cancer Council New South Wales 153 Dowling Street Woolloomooloo NSW 2011 Cancer Council Helpline: Telephone: (02) Facsimile: (02) feedback@nswcc.org.au Website:

3 Introduction This publication has been prepared to help you understand more about kidney cancer. The booklet is mainly about the most common type of kidney cancer in adults, renal cell carcinoma. For specific information about rarer types of adult kidney cancers, such as Wilms tumour (a kidney cancer that occurs almost exclusively in children), phone the Cancer Council Helpline on Many people feel understandably shocked and upset when they are told that they have kidney cancer. This booklet aims to help you understand how kidney cancer is diagnosed and treated. We also include information about support services. We cannot advise you 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 the questions you want to ask your doctors or other health carers. If you are reading this book for someone who doesn t speak English, tell them about the Cancer Council Helpline which is available in other languages (see page 42). You may like to pass this booklet on to your family and friends for their information. 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. Introduction 1

4 Contents What is cancer?... 4 The kidneys... 6 Kidney cancer your questions answered... 8 What is kidney cancer?... 8 Causes of kidney cancer... 9 What are the symptoms? How common is it? Diagnosis Types of tests Stages of kidney cancer Prognosis Treatment Surgery Drug treatments Radiofrequency ablation Cryotherapy Radiotherapy Palliative treatment Which health professionals will I see? Making treatment decisions Decision-making steps Talking with doctors Talking with others A second opinion Taking part in a clinical trial The Cancer Council New South Wales

5 Looking after yourself Healthy eating Being active Complementary therapies Life after treatment Will the cancer come back? Strengthening your relationships Changing body image Sexuality, intimacy and cancer Seeking support Practical and financial help Understanding Cancer program Talk to someone who s been there The Cancer Council Helpline Caring for someone with cancer Further resources Information on the Internet Cancer information library Question checklist Glossary How you can help Regional offices Contents 3

6 What is cancer? Cancer is a disease of the body s cells, which are the body s basic building blocks. Our bodies constantly make new cells: to help us to grow, to replace worn-out cells, or to heal damaged cells after an injury. Normally, cells grow and multiply in an orderly way, but sometimes something goes wrong with this process and cells grow in an uncontrolled way. This uncontrolled growth may develop in to a lump called a tumour. A tumour can be benign (not cancer) or malignant (cancer). A benign tumour does not spread outside its normal boundary to other parts of the body. However, if a benign tumour continues to grow at the original site, it can cause a problem by pressing on nearby organs. The beginnings of cancer Normal cells Abnormal cells Abnormal cells multiply Malignant or invasive cancer Boundary Lymph vessel Blood vessel Some benign tumours are precancerous and may progress to cancer if left untreated. Other benign tumours do not develop into cancer. The Cancer Council Victoria 4 The Cancer Council New South Wales

7 How cancer spreads Primary cancer Local invasion Angiogenesis tumours grow their own blood vessels Lymph vessel Boundary The Cancer Council Victoria Metastasis cells move away from the primary tumour and invade other parts of the body via blood vessels and lymph vessels Blood vessel A malignant tumour is made up of cancer cells. When it first develops, this malignant tumour may not have invaded nearby tissue. This is known as a cancer in-situ (or carcinoma in-situ). As the tumour grows, it invades surrounding tissue becoming invasive cancer. An invasive cancer that has not spread to other parts of the body is called primary cancer. Sometimes cells move away from the original (primary) cancer and invade other organs and bones. When these cells reach a new site, they may continue to grow and form another tumour at that site. This is called a secondary cancer or metastasis. What is cancer? 5

8 The kidneys The kidneys are two bean-shaped organs, each about the size of a fist. They are positioned near the middle of your back, on either side of the backbone. The kidneys are part of the body s urinary system. The main job of the kidneys is to filter the blood and remove any excess water, salt and waste products. These filtered materials are converted into urine which travels from the kidneys to the bladder through tubes called ureters. The urine is stored in the bladder until urination, when it leaves the body through a tube called the urethra. The small sub-units of the kidney that work to carry out filtration of the blood are called nephrons. Nephrons also regulate blood pressure and volume, blood ph and levels of electrolytes and metabolites. There are approximately one million nephrons in each kidney. The kidneys also produce certain hormones, which help control the production of red blood cells and regulate the body s calcium levels. If one kidney is damaged or diseased, the other kidney is usually able to take up the extra work. Many people are able to live quite normally with just one functioning kidney. 6 The Cancer Council New South Wales

9 The kidneys Female Adrenal glands Artery Vein Kidneys Ureters Bladder Uterus Urethra Male Adrenal glands Ureters Artery Vein Kidneys Vas deferens Urethra Bladder Prostate Testicles The kidneys 7

10 Kidney cancer your questions answered What is kidney cancer? Kidney cancer is a type of cancer that occurs in the cells of the kidney. There several different types of kidney cancer: Renal cell carcinoma is the most common type of kidney cancer. This accounts for about 90% of all kidney cancers. Renal cell carcinoma develops in the nephrons of the kidney. Usually only one kidney is affected, but in rare cases the cancer may develop in both kidneys. Transitional cell carcinoma is a less common type of kidney cancer. This is a cancer that begins at the point where the kidney joins the tube that connects to the bladder (the ureter). Rarer types of kidney cancer are renal sarcoma, a cancer that affects the connective tissue of the kidney, and Wilms tumour, a cancer that is more common in children than adults. In the early stages, primary kidney cancer forms a tumour that is confined to the kidney. However, as the cancer grows, it may invade organs near the kidney such as the adrenal glands or liver. Cancer cells may also spread (metastasise) to other parts of the body such as the nearby lymph nodes, lungs or bones. Kidney cancer may be a secondary cancer which has spread from a primary cancer in another part of the body. 8 The Cancer Council New South Wales

11 Causes of kidney cancer The exact causes of kidney cancer are not known. However, several factors are known to increase the risk of kidney cancer. These include: Gender. Men are at a higher risk of developing kidney cancer than women. A family history of kidney cancer. People who have family members with kidney cancer, especially a sibling, are at increased risk. Smoking. People who smoke have almost double the risk of developing kidney cancer as non-smokers. Obesity. Excess body fat may cause changes in certain hormones that can lead to kidney cancer. Exposure to certain substances. People whose occupation involves regular exposure to certain substances, including asbestos, lead, cadmium, herbicides, benzene or organic solvents, may have an increased risk of kidney cancer. High blood pressure. This is especially a risk factor in people who are also obese. Heavy use of certain medications. These include diuretics and painkillers containing phenacetin. Phenacetin is no longer used in painkillers, but people who used to take such painkillers (most likely prior to 1970) may still be affected. Having kidney disease. People with advanced kidney disease have a higher risk of developing kidney cancer. Having an inherited condition such as von Hippel-Lindau disease or Birt-Hogg-Dubé syndrome. Kidney cancer your questions answered 9

12 What are the symptoms? Symptoms of kidney cancer can include: blood in the urine (haematuria) a change in urine colour to a dark, rusty or brown hue pain in the lower back on one side (not due to an injury) pain or a lump in the abdomen or side (flank) constant tiredness unexplained weight loss fever (not caused by a cold or flu) swelling of the abdomen or outer body parts, e.g. ankles, legs a low red blood cell count (anaemia). How common is it? In NSW, about 900 people are diagnosed with kidney cancer each year. Kidney cancer accounts for between 2 and 3% of all cancers diagnosed. Kidney cancer is more common in people over the age of 55. Men are almost two times as likely to be diagnosed with kidney cancer as women. 10 The Cancer Council New South Wales

13 Diagnosis Your doctor will confirm your diagnosis with one or more of the following tests. Types of tests Urine test The most common sign of kidney cancer is blood in the urine. Doctors usually will request a urine test so they can look for any signs of blood and any other abnormalities such as proteins or cancer cells. Cystoscopy If you have blood in your urine, the doctor may recommend cystoscopy. In this test, a urologist passes a tiny telescope called a cystoscope through the urethra and into the bladder. The urologist will examine the inside of the bladder for any tumours or abnormalities. Blood tests The doctor will ask for a blood sample to check for changes in the blood that can be caused by kidney cancer. A blood count will be done to check the number of the different types of blood cells present. Too few, or too many, red blood cells can be a sign of kidney cancer. High calcium levels and high levels of certain liver enzymes can also indicate kidney cancer. Diagnosis 11

14 Tissue biopsy In this test, which is also called fine needle aspiration, a very thin needle is inserted through the skin to remove either fluid or cells. This material is then examined under a microscope. A tissue biopsy is not often used for diagnosis, but may be used to identify the exact type of cancer cells in the body. CT scan A CT (computerised tomography) scan is a procedure that uses x-ray beams to take pictures of the inside of your body. Unlike a standard x-ray, which takes a single picture, a CT scan compiles many pictures into one complete picture of an area of your body. You will have to have an injection of a special dye into one of your veins before the scan. This injection will help make the scan pictures clearer. It may make you feel flushed and hot for a few minutes. Rarely, more serious reactions occur, such as breathing difficulties or low blood pressure. If necessary, you may also be asked to drink a liquid called a contrast solution. This helps outline the organs in your abdomen. 12 The Cancer Council New South Wales

15 You will be asked to lie still on a table while the CT scanner, which is large and round like a doughnut, slowly moves around you. This painless scan will take about 10 to 30 minutes. Most people are able to go home as soon as their scan is over. CT scans are particularly useful in checking whether or not cancer has spread to other organs and tissues. These scans can provide precise information about the size, shape and position of a tumour, and can help identify enlarged lymph nodes that might contain cancer. MRI scan The contrast solution used in CT and MRI scans contains iodine. If you are allergic to iodine, let the person performing the scan know in advance. The MRI (magnetic resource imaging) scan uses a combination of magnetism and radio waves to build up detailed cross-section pictures of the body. This test involves lying on a couch inside a metal cylinder a large magnet that is open at both ends. As with a CT scan, contrast material may be injected into your veins before a scan. Though the MRI scanner can be quite noisy, the test is painless. An MRI scan usually takes less than an hour. You will probably be able to go home when your scan is complete. Diagnosis 13

16 Ultrasound In an ultrasound, soundwaves are used to produce pictures of your internal organs. Before the test you may be asked to drink plenty of fluids so that your bladder is full and a clear picture can be seen. While you are lying down, a gel is spread over your abdomen or back and a small device called a transducer is passed over the area. The device sends out soundwaves that echo when they encounter something dense like an organ or tumour. A computer creates a picture from these echoes. An ultrasound is painless and takes about 15 to 20 minutes. Most people can leave when the ultrasound is complete. Intravenous pyelography An intravenous pyelogram (IVP), or intravenous urography, is a type of x-ray used to locate abnormalities in the urinary system. IVPs are less commonly performed because doctors are usually able to gather adequate data from the MRI, CT or ultrasound procedures. In the IVP procedure, the dye is injected into a vein, usually in your arm. The doctors watch the dye move through the bloodstream and the urinary system on an x-ray screen. This helps them to detect any abnormalities which might be caused by a tumour. A compression band (belt) may be placed around your body to help the doctors obtain a clearer picture. The dye can make you feel hot and flushed for a few minutes, but this feeling quickly disappears. You may also feel some temporary discomfort in your abdomen. An IVP usually takes about an hour and you should be able to leave the hospital or clinic as soon as the test is over. 14 The Cancer Council New South Wales

17 Chest x-ray A chest x-ray is used to check for abnormalities in the organs and bones of the chest. It takes only a few minutes and is painless and safe. If cancer has already been diagnosed, a chest x-ray can show whether the cancer has spread to your lungs or to the bones in your chest. Radioisotope bone scan A radioisotope scan may be done to see if any cancer cells have spread into the bones. For this test, a small amount of radioactive dye will be injected into a vein, usually in your arm. You will need to wait while the dye moves through your bloodstream to your bones, which can take three to four hours. You will then be scanned by a machine which detects radioactivity. A larger amount of radioactivity will show in any areas of bone affected by cancer cells. The amount of radiation used for a bone scan is small, and the radiation disappears from your body within a few hours. Diagnosis 15

18 Stages of kidney cancer The tests described in the previous section of this booklet are to find out if you have cancer and, if so, where the primary cancer is and whether the cancer has spread to other parts of your body. Your tests also provide the doctors information that will help them work out how advanced the cancer is. This is called staging the disease. The most common staging system used for kidney cancer is known as the TNM system: T (Tumour) indicates the depth of the tumour invasion. N (Nodes) indicates whether the lymph nodes are affected. M (Metastasis) indicates whether the cancer has spread to other parts of the body. Your doctors will stage your cancer to ensure they are prescribing the most effective treatment for your particular cancer. If you have any questions about staging, ask your doctors for a more detailed explanation. 16 The Cancer Council New South Wales

19 Prognosis Prognosis means the expected outcome of a disease. You will need to discuss your prognosis with your doctor, but it is not possible for any doctor to give you a prognosis that is 100% accurate. It will be important to complete any tests to assess the stage of the tumour and then to observe how quickly it grows and how well you respond to treatment. In most cases, the earlier that kidney cancer is diagnosed, the better your prognosis will be. However, your prognosis also depends on factors such as your age and general well-being. You will need to talk with your doctor about your prognosis, what treatment options are best for you and what you might expect the outcome to be. Diagnosis 17

20 Treatment Treatments for kidney cancer include surgery, radiotherapy and drug treatments. You need to talk to your doctor about the treatment options that are best for you. See the Making treatment decisions section on page 26. Surgery Surgery is the main treatment for people with kidney cancer, although it is not possible for all patients. If surgery is an option for you, the type of surgery your doctor recommends will depend on your general health and the stage of your cancer. There are two main types of surgery for renal cell carcinoma: A radical nephrectomy, or removal of the affected kidney, is the most common type of surgery. The adrenal gland above the kidney as well as surrounding fatty tissue and nearby lymph nodes may also be removed during the operation. However, it is not always possible to remove all the cancerous tissue. A partial nephrectomy, or the removal of part of the kidney, is the other type of surgery. This operation may be the best choice for people who have a small tumour in one kidney (less than 4 cm). It is also used for people with cancer in both kidneys or those who have only one working kidney. Kidney surgery is usually carried out under a general anaesthetic. An incision (cut) is made at the side of your abdomen where the affected kidney is located. The surgeon will remove as much of the cancer as possible. 18 The Cancer Council New South Wales

21 You may be able to have keyhole surgery (laparoscopy). The surgeon makes several small incisions and inserts a tiny telescope (laparoscope) into one incision. The operation is performed through the other incisions. In some cases, surgery may also be carried out to remove tumours that have developed in other parts of the body because the kidney cancer has spread (metastasised). Generally, however, surgery is not recommended if the cancer has spread extensively. After the operation After surgery, you will be given fluids and medication through an intravenous drip. You may have other temporary tubes in place to help drain fluid away from the site of the operation. For example, you will most likely have a urinary catheter in place for a few days. This is a thin tube inserted in your urethra and attached to a bag that collects urine. It is not usually painful. You will have some pain in the areas where incisions were made and where the kidney (or part of the kidney) was removed. If you have pain or discomfort, ask for medications to help control it. There are several different pain management procedures available to you: you may have an anaesthetic injected into the area around the spine (called an epidural), intramuscular, intravenous or oral drugs, or a patient-controlled analgesic system, called a PCA system. You will be in hospital for anything from a few days to a week. It is a good idea to see a physiotherapist, who can explain to you the safest and best way to move after your surgery. Treatment 19

22 Arterial embolisation Doctors may perform arterial embolisation if your kidney can not otherwise be operated on. In this procedure, a catheter is inserted into the artery that provides blood to the diseased kidney and material is injected to block the bloodflow. This causes the kidney and any tumours in it to die. This procedure is also sometimes done before kidney surgery to reduce bleeding during and after the operation. Drug treatments Immunotherapy Immunotherapy (also called biologic therapy) involves boosting the body s own immune system to help it fight off disease. Immunotherapy is a treatment option for people with kidney cancer metastases. Drugs called cytokines, which are proteins that activate the immune system, can be administered intravenously or orally. They can sometimes cause the cancer to shrink in size. Sometimes this therapy works better if the kidney with the tumour is removed, so your surgeon may first remove all or part of your affected kidney. Side effects of immunotherapy vary, but they may include fever, chills, muscle aches, fatigue and irritation or soreness of the injection site (if the drugs are administered intravenously). 20 The Cancer Council New South Wales

23 Tyrosine kinase inhibitors Recently a class of drugs, generally called tyrosine kinase inhibitors (TKIs), have been trialled in people with advanced kidney cancer. TKIs block chemical messengers, or enzymes, that are produced by the body s cells. These enzymes tell cells when to divide and grow. In trials, the TKIs caused fewer side effects than chemotherapy drugs. Ask your doctor if you are suitable for this treatment, or for other clinical trials. You can also read the Taking part in a clinical trial section on page 30. Chemotherapy Chemotherapy is the name given to the cancer treatment which uses strong anti-cancer drugs, given either as pills or injected into a vein. The drugs work by interfering with the way that cancer cells grow and multiply. Chemotherapy is not routinely used to treat kidney cancer because cancer cells are resistant to many drugs. However, in some cases, chemotherapy is used to treat kidney cancer that has spread (metastasised), because the drugs travel to all areas of the body via the bloodstream. Researchers are looking for more effective types of chemotherapy and there may be an experimental treatment available for you to try. Ask your doctor if you would like more information about this type of clinical trial. For more information about chemotherapy and its side effects, call and request a free copy of the Cancer Council s publication, Understanding Chemotherapy. Treatment 21

24 Radiofrequency ablation Radiofrequency ablation (RFA) is a type of treatment that uses radio waves to heat and destroy cancer cells. This alternative treatment, which is still being evaluated, is sometimes used for patients who are not suitable candidates for surgery. In RFA treatment, a needle is inserted into the tumour when you are under anaesthesia. An electrical current passes into the tumour, destroying the cells and creating scar tissue. In most cases, patients only require a single RFA treatment. The treatment takes approximately 15 minutes, and you can usually go home a few hours after the treatment is administered. Side effects, which include pain or fever, can be managed with medication. Cryotherapy Cryotherapy (cryosurgery) freezes and kills cancer cells. A probe is inserted into the tumour (usually through an incision in the abdomen or back) and liquid nitrogen is injected. This freezes the surrounding area and destroys the cancer cells. Afterwards, the frozen tissue thaws and is absorbed by the body. This treatment is considered an alternative treatment for kidney cancer, as it is still being evaluated. However, trials show that cryotherapy is most suitable for kidney tumours that are less than 4 cm in size. Cryotherapy typically takes about 30 to 60 minutes. You may have to stay in hospital overnight, and your doctors will help you manage any pain with medications. Not all hospitals are equipped to perform cryotherapy, so if this treatment option is recommended, ask your doctor where it is administered and how much the procedure costs. 22 The Cancer Council New South Wales

25 Radiotherapy Radiotherapy is a type of therapy that uses high-energy radiation to kill or damage cancer cells. The radiation is delivered in a beam that is specifically targeted at the treatment site, so as little damage as possible is done to healthy body parts. Radiotherapy is not normally used to treat a primary cancer in the kidney. However, it is sometimes used if a person s general health is too poor for them to undergo surgery. Radiotherapy may also be used to help ease some of the symptoms of kidney cancer (such as pain and bleeding) and secondary cancers (such as bone pain). If you receive radiotherapy, the total number of treatments and duration of your treatment will depend on your situation. Sometimes only a couple of treatments are necessary, or you may require several treatment sessions over a number of weeks. Radiotherapy can cause temporary side effects such as nausea, loss of appetite, diarrhoea and tiredness. It can also cause mild skin irritation, similar to sunburn. Throughout your treatment, you will need to take care Ask your doctor about how to deal with the side effects of radiotherapy, or call to request a copy of the Cancer Council s booklet, Understanding Radiotherapy. when washing and avoid shaving the area that has been exposed to radiation. Check with your doctor or nurse before using any talc powders or lotions. Treatment 23

26 Palliative treatment Palliative treatment is particularly important for people with advanced cancer. It helps improve people s quality of life by alleviating symptoms of cancer, without trying to cure the disease. Often treatment is concerned Palliative treatment can help with pain management it is not just for people who are about to die. with pain relief and stopping the spread of cancer, but it can also involve the management of other physical and emotional problems. Treatment may include radiotherapy, chemotherapy or other medication. For more information on palliative treatment or advanced cancer, call the Helpline for free copies of Understanding Palliative Care or Living with Advanced Cancer, or view them online at 24 The Cancer Council New South Wales

27 Which health professionals will I see? Your GP (general practitioner) will arrange the first tests to assess your symptoms. This can be a worrying and tiring time, especially if you need several tests. If these tests do not rule out cancer, you will usually be referred to a nephrologist (kidney specialist). This specialist will arrange further tests and advise you about treatment options. You will be cared for by a range of health professionals who specialise in different aspects of your treatment. These will probably include: urologist: specialises in diseases and surgery of the urinary system nephrologist: specialises in diseases of the kidneys medical oncologist: responsible for chemotherapy radiation oncologist: responsible for radiotherapy nurses: support you through all stages of your cancer experience cancer care coordinator: coordinates the care you receive and supports you and your family through treatment dietitian: recommends the best eating plan to follow social workers, physiotherapists and occupational therapists: advise you on support services and help you to get back to your normal activities your GP: plays an important role in your ongoing care. Treatment 25

28 Making treatment decisions Sometimes it is difficult to decide on the right treatment. You may feel that everything is happening so fast that you don t have time to think things through. There is usually time for you to consider what sort of treatment you want. Waiting for test results and for treatment to begin can be difficult. While some people feel overwhelmed with information, others feel they don t have enough. You need to make sure you understand enough about your illness, the treatment and side effects to make your own decisions. If you are offered a choice of treatments, you will need to weigh the advantages and disadvantages of each treatment. If only one type of treatment is recommended, ask your doctor to explain why other choices have not been offered. Some people with advanced kidney cancer will choose treatment, even if it only offers a small chance of cure. Others want to make sure the benefits of treatment outweigh any side effects. Still others will choose the You always have the right to find out what a suggested treatment means for you, and the right to accept or refuse it. treatment they believe offers them the best quality of life. Some people may choose not to have treatment to eradicate cancer, but instead will choose to have symptoms managed to optimise their physical and emotional well-being. 26 The Cancer Council New South Wales

29 Decision-making steps 1. Take the time to consider all treatment options. 2. Weigh up the advantages and disadvantages of each treatment. 3. Consider how important each side effect is to you particularly those that affect your lifestyle. If you have a partner, discuss the side effects with them. 4. If only one type of treatment is recommended, ask your doctor if other treatment choices are available. 5..Find out more about the treatment choices offered to you speak to your doctor, get a second opinion, look at the recommended Internet sites on page 44, talk to your family and friends and to other people who have received these treatments. 6. If you are not happy with the information you are given or how it is given tell the doctor about your concerns, or seek a second opinion. Making treatment decisions 27

30 Talking with doctors When your doctor first tells you that you have cancer, it is very stressful and you may not remember very much. It is often difficult to take everything in, so you may want to see the doctor a few times before deciding on treatment. Your doctor may use medical terms you don t understand; it s okay to ask your doctor to explain something again. You can also check a word s meaning in the glossary at the end of this booklet. Before you see the doctor, it may help to write down your questions see the list of suggested questions on page 47. Taking notes during the session or recording the discussion can also 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. Talking with others Once you have discussed treatment options with your doctor, you may want to talk them over with family or friends, nursing staff, the hospital social worker or chaplain, your own religious or spiritual adviser, a cancer support group or the Cancer Council Helpline on Talking it over can help sort out the right course of action for you. 28 The Cancer Council New South Wales

31 A second opinion You may want to get a second opinion from another specialist. Some people feel uncomfortable asking their doctor for a second opinion, but specialists are used to patients doing this. A second opinion can be a valuable part of your decisionmaking process. It can confirm or clarify your doctor s recommended treatment plan and reassure you that you have explored all of your options. A second specialist can also answer any questions you may still have. Your original specialist or family doctor can refer you to another specialist and you can ask for your initial results to be sent to the second-opinion doctor. You may later decide you would prefer to be treated by the doctor who provided the second opinion, and this is your right. You can ask for a second opinion even if you have already started treatment or still want to be treated by your first doctor. Making treatment decisions 29

32 Taking part in a clinical trial Your doctor may suggest you consider taking part in a clinical trial. Doctors conduct clinical trials to test new or modified treatments and see if they are better than current treatments. Before deciding whether or not to join the trial, you may wish to ask your doctor: What treatments are being tested and why? What tests are involved? What are the possible risks or side effects? How long will the trial last? Will I need to go into hospital for treatment? What will I do if problems occur while I am in the trial? Has an independent ethics committee approved the trial? If you are unsure about joining the trial, ask for a second opinion from an independent specialist. If you decide to join a randomised clinical trial, you will be given either the best existing treatment or a promising new treatment. You will be chosen at random to receive one treatment or the other. Being in a trial gives you important rights. You have the right to withdraw at any time. Doing so will not jeopardise your treatment for cancer. For more information about clinical trials and how to find a trial that may be suitable for you call the Helpline for a free copy of Understanding Clinical Trials. 30 The Cancer Council New South Wales

33 Looking after yourself When you find out you have cancer and while you are undergoing treatment, your body is put through a great deal of physical and emotional strain. It is crucial that you take steps to enhance your well-being at this time to help you adapt to the stress that you are facing. Nurturing your body and mind by eating nourishing food, doing some enjoyable physical activity, and taking some time out to relax can help you to feel more balanced and improve your vitality. Healthy eating Eating nutritious food will help you keep as well as possible and cope with the cancer and treatment side effects. Depending on the kind of treatment you have had, you may have special dietary needs. A dietitian can help to plan the best foods for your situation ones that you find tempting, easy to eat and nutritious. The Cancer Council Helpline can send you information on nutrition during and after cancer treatment. Call the Helpline for free copies of Food and Cancer and After Your Cancer Treatment: a guide for eating well and being active. Looking after yourself 31

34 Being active You will probably find it helpful to stay active and to exercise regularly if you can. Physical activity even if gentle or for a short duration helps to improve circulation, reduce tiredness, decrease joint or muscle pain, and elevate mood. The amount and type of exercise you do will depend on what you are used to and how well you feel. Start by making small changes to your daily activities, such as walking to the shops. Even gardening can be beneficial. If you want to do more vigorous exercise, ask your doctor what is best for you. Relaxation techniques Some people find relaxation or meditation helps them feel better by releasing tension and anxiety. Often, relaxation exercises can also help reduce pain and increase energy levels. The hospital social worker or nurse will know whether the hospital or a community health centre runs any programs. You may also enjoy exploring relaxation techniques in the comfort of your own home using audiovisual material such as CDs or DVDs. Contact your local library or the Cancer Council Library to access these resources. 32 The Cancer Council New South Wales

35 Complementary therapies Complementary therapies may help you enhance your general well-being and cope better with side effects such as pain. They may also increase your sense of control over what is happening to you, decrease your stress and anxiety, and improve your mood. There are many types of complementary therapies, including acupuncture, massage, hypnotherapy, relaxation, yoga, herbal medicine and nutrition. While some cancer treatment centres offer complementary therapies as part of their services, you may have to go to a private practitioner. Ask what s available at your hospital, and be sure to let your doctor know about any complementary therapies you are using. Call the Helpline for a copy of the Cancer Council s latest publication on complementary and alternative therapies. Looking after yourself 33

36 Life after treatment Many people find it helps to give themselves time to recover from treatment. You will find you must cope with both physical and emotional changes. You need time to get your strength back. If you re responsible for the house, you ll need some help for a while. If you work, you ll need to ease back into it slowly, rather than rushing back the week after leaving hospital. You might have to remind your family and friends that for a while you won t be fit enough to do all your usual activities. After treatment is over it is common for people to feel anxious rather than more secure. While you were having treatment, you were busy with appointments and now you are facing life again with an uncertain future. Adjusting to life after cancer can be difficult if people around you expect your life to return to the way it was before you were diagnosed. 34 The Cancer Council New South Wales

37 Everyone will eventually re-establish their daily routine, but it will be at their own pace. It may take some time to balance the need for regular checkups with resuming day-to-day activities and making plans for the future. Talking to someone who has had kidney cancer can help you deal with this uncertainty. For more information see page 41. Will the cancer come back? After treatment finishes, you might feel pressure to get back to normal life. Many people feel that life will never be the same after an experience with cancer indeed, some people have even reported that they have a new perspective on life and that they see things with a new clarity. Still, fear of cancer returning can feel like a shadow on your life. You might worry about every ache and pain and wonder if it is the cancer coming back. It might help to talk to your doctor and ask about what to expect if the cancer were to return. This might reassure you. This is a difficult time and it will take time to readjust. If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation for things that previously gave you pleasure, talk to your doctor. You might be clinically depressed and there are ways that your doctor can help you. Life after treatment 35

38 Strengthening your relationships The strong emotions you experience as a result of cancer may affect your relationships with people close to you. Your experiences can cause you to develop a new outlook on your values, priorities and life in general. It may help to share those thoughts and feelings with your family, friends and work colleagues. It may be uncomfortable to talk about your feelings; take your time and approach others when you are ready. You may feel relieved when you have talked to them. People usually appreciate insight into how you are feeling and guidance on how they can best support you during and after treatment. This open and honest approach can strengthen your relationships. While you are giving yourself time to adjust to life after cancer, remember to do the same for your friends and family. Everyone will react in a different way by putting on a happy face, playing down your anxiety, or even ignoring you. They are also adjusting to changes in their own way. If someone s behaviour upsets you, it will probably help to have a discussion about how you both feel about the situation. 36 The Cancer Council New South Wales

39 Changing body image Cancer treatment can change the way you feel about yourself (your self-esteem). You may feel less confident about who you are and what you can do. This is more common if your body has changed physically, but even if it has not, you may still be affected by lowered self-esteem. Give yourself time to adapt to these changes and try not to focus solely on the parts of you that have changed. Seeing yourself as a whole person (your body, mind and personality) can help to increase your selfesteem. You may eventually adjust to and come to accept any physical changes. For practical suggestions about hair loss, weight changes and other physical changes, call the Helpline. Look Good Feel Better is a program that helps people restore their self-esteem by managing appearance-related side effects. Call or visit Life after treatment 37

40 Sexuality, intimacy and cancer The role that sexuality and intimacy play in people s lives is ever changing and depends on one s age, environment, health, relationships, culture, beliefs and interest. As individuals, people not only have different ways of expressing and defining sexuality and intimacy, but they also place their own importance on these needs. Having cancer can affect your sexuality in both physical and emotional ways. The impact of these changes depends on many factors, such as your treatment and its side effects, the way you and your partner communicate, and your self-confidence. Knowing the potential challenges, such as a change in libido, and addressing them if they affect you personally will help you overcome or adjust to these changes. Sexual intercourse may not always be possible, but closeness and sharing are vital to a healthy relationship. More information about sexuality for men and women is available. Call for a copy of the Cancer Council s sexuality booklets. 38 The Cancer Council New South Wales

41 Seeking support When you are first diagnosed with cancer, it is normal to experience a range of emotions, such as fear, sadness, depression, anger or frustration. If anxiety or depression is ongoing or severe, tell your doctor about it as counselling or medication can help. It may help to talk about your feelings with others. Your partner, family members and friends are a good source of support or you might prefer to talk to: members of your treatment team a hospital counsellor, social worker or psychologist your religious or spiritual adviser a support group see page 41 the Cancer Council Helpline. If you have children, the prospect of telling them you have cancer can be frightening and unsettling. The Cancer Council booklet When a Parent Has Cancer: how to talk to your kids can help you prepare for this difficult conversation. You may find that your friends and family don t know what to say to you. In time, you may feel able to approach your friends directly and tell them what you need. Some people prefer to ask a family member or a friend to talk with others and coordinate any offers of help. Some people may feel so uncomfortable that they avoid you. They may expect you to lead the way and tell them what you need. This can be difficult to handle and can make you feel lonely. The Cancer Council s booklet Emotions and Cancer may help at this stressful time. Ring for a copy or download it from the Cancer Council s website, Seeking support 39

42 Practical and financial help A serious illness often causes practical and financial difficulties. You don t need to face these alone. Many services are available to help: Financial assistance, through benefits and pensions, can help pay for the cost of prescription medicines and for travel to medical appointments. Home nursing care is available through community nursing services or through the local palliative care services. Meals on Wheels, home care services, aids and appliances can make life easier. To find out more contact the hospital social worker, occupational therapist or physiotherapist, or the Cancer Council Helpline. Understanding Cancer program If you want to find out more about cancer and how to cope with it, you may find the Cancer Council s Understanding Cancer program helpful. The program offers practical information and discussions about many of the issues people experience after a diagnosis of cancer. Topics covered include: what cancer is, cancer symptoms and side effects, treatment, palliative care, diet, exercise and complementary therapies. Courses are held frequently at hospitals and community organisations throughout NSW. Call the Helpline to find out more. 40 The Cancer Council New South Wales

43 Talk to someone who s been there Getting in touch with other people who have been through a similar experience to you can be very beneficial. There are many ways you can get in contact with others for mutual support and to share information. In these support settings, most people feel they can speak openly, share tips with others, and just be themselves. You will probably find that you feel comfortable talking about your diagnosis and treatment, your relationships with friends and family, and your hopes and fears about the future. Support services are available for patients, carers and family members. They include: Face-to-face support groups, which are often held in community centres or hospitals Tumour- or situation-specific telephone support groups, which are facilitated by trained counsellors Online discussion forums where people can connect with each other any time Cancer Council Connect, a program that matches you with a volunteer who has been through a similar cancer experience, and who understands how you re feeling. Ask your nurse or social worker to tell you about support groups in your area. Call the Helpline to find out how you can connect with others and visit to access the Cancer Services Directory or join the online discussion. Seeking support 41

44 The Cancer Council Helpline Monday to Friday 9am to 5pm The Cancer Council Helpline is a service of the Cancer Council NSW. There is no charge for this service except for the cost of a local call. The Cancer Council Helpline is a telephone information and support service for people affected by cancer. You can talk about your concerns and needs confidentially with specialised oncology health professionals. They can send you written information and put you in touch with appropriate services in your own area. If calling outside business hours, you can leave a message on an answering machine and your call will be returned the next business day. You can call the Cancer Council Helpline, Monday to Friday, 9am to 5pm, for the cost of a local call. Cancer Council Helpline Cantonese and Mandarin Greek Italian Arabic Tele-typewriter (TTY) for deaf or hearing-impaired people... (02) The Cancer Council New South Wales

45 Caring for someone with cancer You may be reading this booklet because you are caring for someone with cancer. Being a carer can be very stressful, especially when the person you are looking after is someone you love very much. Look after yourself during this time. Give yourself some time out, and share your worries and concerns with somebody neutral such as a counsellor or your doctor. Many cancer support groups are open to carers as well as people with cancer. A support group can offer a valuable opportunity to share experiences and ways of coping. There are several support services that can help you in your caring role, such as Home Help, Meals on Wheels or visiting nurses. There are also many organisations and groups that can provide you with information and support, such as Carers NSW. Phone to talk about your needs, or visit Call the Cancer Council Helpline to find out more about different services or to obtain a free copy of the Caring for Someone with Cancer booklet. Seeking support 43

46 Further resources Information on the Internet The Internet can be a useful source of information, although not all websites are reliable. The websites listed below are good sources of reliable information. Australian The Cancer Council NSW... The Cancer Council Australia... Cancer Institute NSW... Health Insite an Australian Government initiative... Commonwealth Department of Health and Ageing... NSW Health... International American Cancer Society... Cancerbackup... US National Cancer Institute... Kidney Cancer Association The Cancer Council New South Wales

47 Cancer information library Following a cancer diagnosis, many people would like to access information about new types of treatment, the latest research findings, and stories about how other people have coped. The Cancer Council s library has a wealth of information on these topics. There are more than 3,000 resources in the collection, including books, videos, DVDs and a large range of current cancer medical journals. You can visit the library at 153 Dowling Street, Woolloomooloo (9am-5pm Monday-Friday), borrow by post or ask your local librarian to organise an inter-library loan. Call our librarian on or library@nswcc.org.au. Further resources 45