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

Transcription

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

2 Understanding Bowel Cancer A guide for people with cancer, their families and friends. First published January 2002 Revised July 2004, July 2006, November 2008 Cancer Council New South Wales 2008 ISBN Understanding Bowel Cancer is reviewed approximately every two years. Check the publication date above to ensure this copy of the booklet is up to date. To obtain a more recent copy, phone the Cancer Council Helpline on Acknowledgements We thank the reviewers of this booklet: John Cartmill, Professor of Surgery, Australian School of Advanced Medicine, Macquarie University; Les Bokey, Professor of Colorectal Surgery, Clinical Director, Gastroenterology and Liver Services, Concord Hospital; Kathy Chapman, Nutrition Program Manager, Cancer Council NSW; Victoria Dolphin, Helpline Program Coordinator, Cancer Council NSW; Jane Ewins, Consumer; Janet Thoseby, Cancer Nurse Coordinator Colorectal/Upper GIT, Gosford Hospital; John Newsom, Consumer. We also wish to acknowledge the National Health and Medical Research Council for kindly permitting its publication, Clinical Practice Guidelines for the Prevention, Early Detection and Management of Colorectal Cancer, to be used as the main source of the earlier versions of this booklet. Editor: Laura Wuellner. Cartoons: Greg Smith. Cancer Council New South Wales 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, phone visit Cancer Council s website at 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. 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 booklet has been prepared to help you understand more about cancer of the large bowel. Cancers of the colon or rectum (colorectal cancers) are types of large bowel cancer. Many people feel understandably shocked and upset when told they have bowel cancer. We hope this booklet will help you understand how bowel 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 questions you want to ask your doctors or other health carers. You may like to pass this booklet 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. If you re reading this booklet for someone who doesn t understand English, contact the Cancer Council Helpline for services available in different languages (see page 64). Introduction 1

4 Contents What is cancer?... 4 The digestive system... 6 Terminology... 8 What is bowel cancer?... 9 How common is it?... 9 What are the symptoms? Causes of bowel cancer Diagnosis Bowel preparation Staging bowel cancer Prognosis Which health professionals will I see? Treatment Surgery Recovery after bowel surgery Diet after bowel surgery Chemotherapy Radiotherapy Palliative treatment Changes to bowel habits Incontinence Having a stoma Cancer Council NSW

5 Making treatment decisions Decision-making steps Talking with doctors Talking with others A second opinion Taking part in a clinical trial Looking after yourself Healthy eating Being active Complementary therapies Strengthening your relationships Changing body image Sexuality, intimacy and cancer Life after treatment Seeking support Practical and financial help Understanding Cancer program Talk to someone who s been there Cancer Council Helpline Caring for someone with cancer 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 result in abnormal blood cells, or may develop into 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. Cancer Council Victoria 4 Cancer Council NSW

7 How cancer spreads Primary cancer Local invasion Angiogenesis tumours grow their own blood vessels Lymph vessel Boundary 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. A metastasis keeps the name of the original cancer. For example, bowel cancer that has spread to the liver is still called bowel cancer, even though the person may be experiencing symptoms caused by problems in the liver area. What is cancer? 5

8 The digestive system The digestive system allows the body to digest food, absorb water and nutrients and get rid of remaining solid waste matter (called stools or faeces). It is sometimes called the gastrointestinal (GI) tract. The digestive system Transverse colon Colon Large bowel Rectum Anus Descending colon Small bowel Sigmoid colon 6 Cancer Council NSW

9 The lower GI tract has two main parts: 1. Small bowel: takes food from the stomach and absorbs nutrients. The small bowel consists of the duodenum, jejunum and ileum. It is about five metres long. 2. Large bowel: absorbs salt and water, and stores waste matter until it is ready to be passed out of the body as a bowel movement. The large bowel is about 1.5 metres long. The large bowel has several sections: Cecum: a pouch at the beginning of the large bowel that receives waste from the small bowel. The appendix is a small tube hanging off the end of the cecum. It is rare for the appendix to become cancerous. Colon: the main working area of the large bowel, where water is removed from waste matter. The colon is divided into four parts (the ascending colon, transverse colon, descending colon and sigmoid colon), and stretches from the cecum to the rectum. It is about 1.5 metres long. Rectum: the last 15 to 20 centimetres of the large bowel. The rectum stores waste (stools) until they are expelled during a bowel movement. Anus: the opening at the end of the digestive tract. The anus has strong sphincter muscles that form a valve. During a bowel movement, these muscles relax to release stools from the rectum. The digestive system 7

10 Terminology The use of the word bowel can be confusing. This is because some people use the word bowel to refer to the entire lower GI tract, while other people are referring specifically to the small or large bowel. This booklet is about the diagnosis and treatment of large bowel cancer. Therefore, the word bowel refers to the large bowel. The term large intestine is not used in this booklet. Treatment for large bowel cancer varies depending on the extent and location of the disease. For example, some types of surgery are only used to treat rectal and anal cancer. In this case, the terms rectum or anus will be used. The word colorectal is commonly used to describe cancers of the colon or rectum. If you are confused about the use of the word bowel, ask your doctor or nurse to explain more clearly. You can also call the Cancer Council Helpline on for more information. 8 Cancer Council NSW

11 What is bowel cancer? Bowel cancer can form in two ways: it can grow from the inner lining of the bowel, or from a small fleshy growth that looks like a mushroom, called a polyp. Most polyps are harmless (benign), but some can become cancerous. If untreated, bowel cancer can spread (metastasise) to other parts of the body. In most cases, it spreads fairly slowly, so it may stay in the bowel for months or years before spreading to other organs. Doctors usually remove all visible polyps in the bowel during screening and diagnostic tests. If it spreads outside the bowel, cancer commonly affects lymph nodes (glands). Lymph nodes are small, bean-shaped masses that collect and destroy bacteria and viruses in the body. They are part of the body s lymphatic system, which plays an important role in the functioning of the immune system. How common is it? Bowel cancer is the second most common cancer affecting people in NSW. In 2005, there were 6,096 new cases of bowel cancer diagnosed in NSW (3,433 male and 2,663 female). About one in 18 men and one in 28 women will develop bowel cancer before the age of 75. The older you are, the greater your chance of developing bowel cancer. While it affects mainly people over 50, bowel cancer can occur at any age. What is bowel cancer? 9

12 What are the symptoms? In its early stages, bowel cancer does not usually cause noticeable symptoms. Some people do experience symptoms, however, which include: a change in bowel habits, possibly including changes to the appearance of stool, constipation, or more frequent, smaller bowel movements a feeling of fullness in the bowel or rectum a feeling that the bowel hasn t emptied completely after a bowel movement abdominal pain during a bowel movement blood in the stool or on the toilet paper complete obstruction of the bowel unexplained weight loss weakness or fatigue rectal or anal pain anaemia. Many of these symptoms are common to benign large bowel conditions, such as haemorrhoids or tears in anal tissue. Also, certain foods or medications can cause changes in bowel habits or cause stools to turn red or black. If you have any of the above symptoms, talk to your GP. 10 Cancer Council NSW

13 Causes of bowel cancer Different factors may contribute to the development of bowel cancer: The risk of developing bowel cancer is greater for people who are aged 50 or more. People who have inflammatory bowel disease, such as Crohn s disease or ulcerative colitis, have a significantly increased risk. Lifestyle factors such as weight, physical activity, diet and alcohol consumption can play a part. Some people who develop bowel cancer inherit damaged genes from their parents, but this is rare. See the following sections for more information. Familial (hereditary) cancer If one or more of your family members (such as a parent or sibling) have been diagnosed with bowel cancer before the age of 55, it may run in your family. This is also a possibility if two relatives on the same side of your family have bowel cancer. If you are concerned that you have a family history of bowel cancer, schedule regular checkups with your general practitioner (GP) or discuss whether genetic testing would be suitable for you. Doing regular physical activity, maintaining a healthy weight and eating a diet high in fruit, vegetables and fibre may help protect against bowel cancer. Call the Cancer Council Helpline on for more information about having a family history of cancer. What is bowel cancer? 11

14 Genetic conditions About 5% to 6% of bowel cancers are caused by an inherited genetic condition. One of these conditions, familial adenomatous polyposis (FAP), causes polyps to form in the bowel. FAP is a rare condition, occurring in one in 8,000 people. Polyps caused by FAP are initially benign, but if they are not removed, they will become cancerous. The information in this booklet is relevant to people with HNPCC or FAP who develop bowel cancer. More information is available from the Cancer Council Helpline, call Another genetic condition is called hereditary non-polyposis colorectal cancer (HNPCC) or Lynch syndrome. People with HNPCC have an increased risk of developing certain types of cancer, including cancer of the colon or rectum. Not everyone with HNPCC will develop bowel cancer. 12 Cancer Council NSW

15 Diagnosis Your doctor will confirm your diagnosis with some tests. The tests or scans you have depend on your symptoms and what is available at your hospital or treatment centre. The types of tests include: general tests to check your overall health and body function tests to locate cancer tests to determine if cancer has spread (metastasised). Some tests may be repeated after your diagnosis to check your response to treatment. None of the diagnostic tests is 100% accurate, which is why it is common to have two or more tests to diagnose bowel cancer. The most definitive way to diagnose cancer is to analyse a tissue sample to see if cancer cells are present (biopsy). Physical examination Your doctor may feel your abdomen to check for swelling. You may also have a digital rectal examination. In this exam, your doctor inserts a gloved finger into your rectum. This test cannot diagnose cancer, but it may help the doctor feel anything unusual around your anus and rectum (the lowest six to eight centimetres of the large bowel). This test may be uncomfortable but it is rarely harmful. You may feel like you are going to open your bowels, but this is very unlikely. Diagnosis 13

16 Blood test You may have a blood test to assess your general health and measure a molecule called carcinoembryonic antigen (CEA), which is produced by your bowel and some cancer cells. The level of CEA if your blood can reflect the number of cancer cells in your body. CEA levels are not a reliable marker, however, so doctors usually perform further tests if your blood tests show that you have a high CEA level. The blood test may also measure chemicals that are found or made in your liver. An abnormal test result may be a sign that cancer has spread to your liver. Faecal occult blood test Blood in your stool may be an indicator of bowel cancer. Some people have a faecal occult blood test (FOBT) to check their faeces (stool) for traces of blood that can only be seen with a microscope. The FOBT can be done at home using a kit. If the test is positive (you have blood in your stool), contact your doctor. In some cases, blood in the stool is an indication of haemorrhoids or another benign condition. However, traces of blood in the stool may be a symptom of bowel cancer, so it is important to have further tests. 14 Cancer Council NSW

17 Bowel preparation Before some diagnostic tests, such as a sigmoidoscopy (page 16) and a colonoscopy (page 17), you will have to clean out your bowel. This is because stools and faecal matter impair the doctor s ability to see the bowel. One common way to clear the bowel is using an enema. This is a liquid solution that is inserted directly into the rectum. The enema solution washes out the bowel, and is usually expelled (along with any faeces) into the toilet. Another type of bowel preparation is an oral laxative. Taking this tablet will cause you to have watery diarrhoea. Sometimes you will have to fast before an examination. Your doctor might advise you to go on a liquid diet (broth, water, plain coffee and tea) for 12 to 24 hours before your appointment. Diagnosis 15

18 Sigmoidoscopy A sigmoidoscopy is a preliminary diagnostic test for large bowel cancer. Some people have this test as a screening procedure before having a colonoscopy. You will probably have to prepare for the sigmoidoscopy by doing a bowel preparation (see page 15) so the doctor can see your bowel clearly. Before you have a sigmoidoscopy, your doctor will give you a light anaesthetic. You will lie on your side on an examination table and a rigid or flexible tube (sigmoidoscope) will be inserted into your anus to examine your rectum and lower colon for cancer. The sigmoidoscope blows air into the bowel, to allow the doctor to see more clearly. The doctor can use the sigmoidoscope tool to remove a piece of tissue (such as a polyp) for examination. This is called a biopsy. A sigmoidoscopy allows doctors to view only the last half metre of the colon, whereas a colonoscopy allows an examination of the entire colon, which is about 1.5 metres long. A sigmoidoscopy takes about 10 to 20 minutes. Though it may feel uncomfortable, you should not feel severe pain. Cramping and pressure in your lower abdomen will ease when the air leaves your colon after the test is finished. 16 Cancer Council NSW

19 Colonoscopy A colonoscopy is an examination of the large and small bowel using a flexible tube with a camera on the end, called an endoscope. Before a colonoscopy, you will have a bowel preparation to clean your bowel. On the day of the procedure, you will probably be given an anaesthetic to make you drowsy or put you to sleep during the examination. Your doctor inserts the endoscope into your anus, and up into your rectum and colon. If necessary, your doctor will pump air into your colon and remove any polyps that require further examination (biopsy). A colonoscopy usually takes about 20 to 30 minutes. The main side effect of a colonoscopy is flatulence and wind pain, which is caused by air pumped into the large bowel during the procedure. More serious but rare complications that may occur include puncturing of the bowel or bleeding. Your doctor will talk to you about these side effects. You ll need to have someone take you home after the procedure, as you will feel drowsy or weak. Diagnosis 17

20 Virtual colonoscopy Some people have a virtual colonoscopy. This is a medical imaging procedure that uses a CT or MRI scanner (see pages 20 to 21) to create images of the colon and rectum and display them on a screen. Before a virtual colonoscopy, you will have a bowel preparation to clear your bowel. You will probably lie on your back or stomach for the procedure. A thin tube will be inserted into your rectum, and air will be pumped into your colon. This may feel unnatural or uncomfortable. Talk to your doctor if you are concerned. After your colon is inflated, you will be moved into the scanner. The scanner will create images of your colon while you hold your breath for short intervals. A virtual colonoscopy is a less invasive procedure than a colonoscopy, but your doctor will not be able to see a detailed picture of your colon. The doctor will also be unable to take samples of tissue. If any abnormalities are suspected, or if the scan results are unclear, you will have a standard colonoscopy (see page 17). 18 Cancer Council NSW

21 Barium enema A barium enema is a type of x-ray procedure used to diagnose small and large bowel cancer. Before having this procedure, you will have a bowel preparation. During a barium enema, you will lie on an x-ray table while a liquid-filled tube is inserted into your rectum. The liquid in the tube is the enema, which contains a special contrast called barium that shows up on x-ray scans. The tube containing the enema is released into your colon. The doctor may also pump air into your colon to force the enema fluid into the creases in the bowel wall, and take x-rays of your inflated colon. This 30-minute test can be uncomfortable, but most people don t need pain relief. When the enema enters your body, it may feel like your abdomen is being filled. This is a common sensation, and it will ease when the enema is removed. Diagnosis 19

22 CT scan A computerised tomography (CT) scan is a procedure that uses x-ray beams to take pictures of the inside of your body. This painless test will help your doctor assess if cancer has spread to your lymph nodes or other organs. Before the scan, a special dye that will help create clearer pictures may be injected into one of your veins. The injection may make you feel hot all over for a few minutes. You may also have a strange taste in your mouth from the dye. It usually takes about 30 minutes to prepare for the scan. The special dye that is used for a CT or MRI scan is called a contrast solution and may contain iodine. If you are allergic to iodine, fish or dyes, let the person performing the scan know in advance. The scan itself takes about five to 10 minutes. You will lie flat on a table while the CT scanner, which is large and round like a doughnut, rotates around you and takes a series of pictures. Most people are able to go home when their scan is complete. 20 Cancer Council NSW

23 MRI scan A magnetic resonance imaging (MRI) scan uses a combination of magnetism and radio waves to build up detailed crosssection pictures of your body. The test involves lying on a table inside a metal cylinder a large magnet that is open at both ends. As with a CT scan, a special dye may be injected into your veins before the scan. This will help doctors determine where cancer is located in your body. Some people feel anxious lying in the narrow metal cylinder. Talk to your health care team before the scan if you are claustrophobic. It may be helpful to take some medication to ease this feeling, or to talk to the person operating the scan through an intercom. The test is painless and is usually complete in about one hour. You will usually be able to go home when the scan is over. People who have a pacemaker or certain other metallic objects in their body cannot have an MRI due to the effect of the magnet. Diagnosis 21

24 PET scan A positron emission tomography (PET) scan is a specialised imaging test available at some hospitals. A PET scan may be used to determine if bowel cancer has spread to other parts of your body. In this test, you will be given a radioactive glucose solution. It takes 30 to 90 minutes for the glucose solution to circulate your body, and you will be sedated or asked to sit quietly during this time. Your body will be scanned for high levels of radioactive glucose. Active cells, such as cancer cells, will have an increased uptake of this solution. Though it may take several hours to prepare for and have a PET scan, it is usually done on an outpatient basis. Ultrasound An ultrasound scan uses soundwaves to create a picture of the organs in your body. In an abdominal ultrasound, a gel is spread over your abdomen to conduct the soundwaves. A small device called a transducer is passed over the area. The device sends out soundwaves that echo when they An ultrasound scan is sometimes used to check for any signs of cancer that has spread to the liver. encounter something dense, like a tumour. The ultrasound images are projected onto a computer screen. An ultrasound is painless and takes about 15 to 20 minutes. It is usually an outpatient scan. 22 Cancer Council NSW

25 Endorectal ultrasound An endorectal ultrasound scan is usually performed if other tests have detected cancer in your rectum or anus. This type of ultrasound scan detects abnormalities in the rectal area and helps your doctor determine the size of the cancer, and if it has spread into the bowel wall. It may also be used to help a surgeon plan surgery or decide whether further treatment is required. Before the examination, you may receive a general anaesthetic. If you don t have an anaesthetic, you will probably experience some discomfort. An endorectal ultrasound is not painful. A short device called a probe is inserted into your rectum. The soundwaves that are generated from the probe will form a picture on a computer screen. An endorectal ultrasound usually takes about 10 minutes. Chest x-ray A chest x-ray is not used to detect cancer in the bowel, but it may be used to check if the cancer has spread from the bowel into the lungs or lymph nodes in your chest. Sometimes an x-ray is also used after treatment, to check for cancer in your body. Diagnosis 23

26 Staging bowel cancer The tests described on pages 13 to 23 will help determine whether you have bowel cancer. Some tests also show if the cancer has spread to other parts of your body. The stage of cancer describes the extent of disease in your body. At first, your medical team will estimate the stage of your cancer, based on the results of diagnostic tests. However, if you have surgery and tissue is removed, a pathologist will examine the tissue under a microscope and give you a more accurate stage. Doctors commonly use an international staging system called TNM to stage different types of cancer. The TNM system is based on certain criteria. The T refers to the tumour size, the N to the lymph nodes (or glands) and the M to metastasis, or how far the cancer has spread. In the TNM system, each letter is assigned a number that indicates how advanced the cancer is. Staging the cancer helps your health care team decide what type of treatment is best for you. If you are confused about the stage of your cancer, ask your doctor or nurse to explain cancer staging in plain English. You can also call the Cancer Council Helpline on for more information about staging bowel cancer. 24 Cancer Council NSW

27 Prognosis Prognosis means the expected outcome of a disease. Generally, the earlier bowel cancer is diagnosed and the more localised it is, the better your prognosis. You will need to discuss your prognosis with your doctor, but it is not possible for any doctor to predict the exact course of your illness. Test results, the rate and depth of tumour growth, how well you respond to treatment, and other factors such as age, general health and your medical history are all important factors in assessing your prognosis. Diagnosis 25

28 Which health professionals will I see? Your GP 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 surgeon or gastroenterologist. 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. This multidisciplinary team may include: cancer nurse coordinator or clinical nurse consultant: coordinate your care, support you throughout treatment and answer your questions colorectal surgeon: operates on cancer in the large bowel dietitian: supports and educates patients about nutrition and diet during treatment and recovery gastroenterologist: specialises in the digestive system and its disorders medical oncologist: coordinates your chemotherapy treatment operating room staff (such as anaesthetists and technicians): support you during surgery and recovery psychologist and counsellor: help you manage your feelings and cope with changes to your life as a result of cancer or treatment radiation oncologist: coordinates your radiotherapy treatment stomal therapy nurse: provides information about surgery and adjusting to life with a temporary or permanent stoma (see page 43) social worker: provides emotional support and practical assistance to patients and carers. 26 Cancer Council NSW

29 Treatment The main types of treatment for bowel cancer are surgery, chemotherapy and radiotherapy. Sometimes you will only require one type of treatment, but treatments may also be used in combination. Surgery Most people have surgery to treat bowel cancer. The surgeon will cut out the part of the bowel with cancer and then join the two ends of the bowel. If the bowel can t be joined, you will have a stoma (see pages 43 to 46). Minimally invasive surgery Minimally invasive surgery is a term that describes surgical techniques involving smaller cuts. This is sometimes called keyhole or laparoscopic surgery. Laparoscopic bowel surgery is often recommended if your surgeon is confident that your tumour will be easy to remove. It is a preferred method, as it avoids a large cut down the centre of your abdomen and results in less pain and scarring, a faster recovery, and a lower risk of infection. Whether or not you are able to have minimally invasive bowel surgery depends on the location of the cancer and its size, and what is available at your hospital or treatment centre. Ask your surgeon if this type of surgery is suitable for you. Treatment 27

30 Surgery for colon cancer The aim of colon cancer surgery is to remove the cancer and enough of the surrounding tissue to ensure no detectable cancer is left behind. The most common type of colon cancer surgery is called a colectomy. In this procedure, the surgeon will cut into the abdomen to remove the cancer and the tissue around it. The five main types of colectomies are: right hemicolectomy: cancer from the right side is removed left hemicolectomy: cancer from the left side is removed transverse colectomy: cancer from the middle is removed sigmoid colectomy: cancer in the sigmoid colon is removed subtotal or total colectomy: most or all of the bowel is removed. Types of colectomies for colon cancer Right hemicolectomy Left hemicolectomy Transverse colectomy Sigmoid colectomy A colectomy may be done anywhere within the shaded areas of the diagrams. 28 Cancer Council NSW

31 If your cancer is low in the sigmoid colon or close to the rectum, another type of surgery you may have is a high anterior resection. This type of surgery involves removing a section of bowel and rejoining the remaining parts of the bowel together in the upper area of the rectum. After surgery you will have a scar, usually running from your navel to your pubic area. Some surgeons use a minimally invasive approach to avoid cutting through the abdomen see page 27. Depending on how much of your bowel is removed, you may have diarrhoea or need to open your bowels more often. You may also need a temporary stoma to allow the area to heal. In some cases, a surgeon will perform a colectomy and will be unable to join the healthy parts of your colon. The surgeon will instead connect the large bowel to a permanent opening on the outside of the body, called a stoma. This procedure is called a colostomy. See page 33 for information about recovering from surgery. For information about temporary and permanent stomas, see pages 43 to 46. Treatment 29

32 Surgery for rectal and anal cancers If you have rectal or anal cancer, you may have a type of surgery: Anterior resection: The surgeon cuts out cancerous tissue in the rectum. You may have a cuts into your abdomen, or your surgeon may use minimally invasive techniques. The type of surgery you have will depend on your personal circumstances. In an anterior resection, the cancer and surrounding tissue is removed, together with its blood supply and nearby lymph nodes. The ends of your bowel are rejoined. Anterior resection If you have an ultra-low anterior resection, your entire rectum will be removed. Your surgeon will also perform a procedure called ileoanal anastomosis. This procedure creates an internal pouch (called a colonic J-pouch) using the lining of your small bowel. You may have a temporary stoma while your J-pouch heals. When your J-pouch is healed, it will be connected to your anus and work as a rectum. The J-pouch should reduce the number of bowel movements you have after surgery. Ultra-low anterior resection 30 Cancer Council NSW

33 Abdominoperineal (AP) resection: An AP resection is a less common type of rectal surgery. In this procedure, the rectum and anus are removed. After an AP resection, you will have two wounds: one on your abdomen and one where your anus was removed. Your doctor will also create a permanent stoma, and waste will be removed through this opening. Abdominoperineal (AP) resection Local excision: The surgeon inserts a tube into your rectum and lower colon and removes the cancer without cutting into the abdomen. There are several types of local excision. For example, if the surgeon is cutting out a cancerous polyp, this is called a polypectomy. If a surgeon does not cut through the muscle controlling the opening and closing of the anus (sphincter), it is called a transanal resection. The type of surgery you have will depend on the location of your cancer. For example, some people have cancer that is in or near their anal sphincter muscles, so a transanal resection is not appropriate. Whether or not you have a stoma also depends on the type of surgery you have. The Recovery after bowel surgery section (page 33) provides more information about side effects of surgery. Treatment 31

34 Surgery for advanced cancer A small number of people will have two separate cancers in their large bowel at the same time. Doctors may find the cancers using diagnostic tests or during surgery. In this case, there are three options for surgery: 1. Remove the two small sections of the bowel. 2. Remove one larger section of the bowel, containing both areas with cancer. 3. Remove the entire colon and rectum (proctocolectomy) to prevent any chance of another cancer forming. The type of surgery you have depends on your doctors recommendations and what you want. In some cases, the cancerous part of the large bowel will be attached to another organ, such as the uterus or bladder. This may be caused by inflammation, or by the cancer spreading. Your surgeon may remove the attached organ with the large bowel. If you require this type of operation, talk to your surgeon about what to expect. For example, the removal of a woman s uterus (hysterectomy) causes infertility, so it is important to talk to a doctor or a fertility counsellor before treatment. This person can help you address your feelings and explore your options. No matter what type of surgery you have, it will be important for you to have regular checkups for the rest of your life. This is because your chances of developing another primary cancer are higher than average. For more information about surgery for advanced bowel cancer, call the Cancer Council Helpline on Cancer Council NSW

35 Recovery after bowel surgery The recovery time after bowel surgery varies, depending on the extent of your surgery. You will probably be in hospital for about five to 10 days after surgery, however it can take six weeks or more to fully recover, especially if the surgeon made a cut down your abdomen. While you are in hospital, and when you return home, you may have: Blood clots: People who have abdominal surgery are at risk of getting blood clots in their legs, which can be lifethreatening. During surgery, your surgeon may apply pressure to your calves using special stockings. Afterwards, you may be given regular injections of a blood-thinning substance. It is important to get out of bed and walk around as soon as you are able, and move your legs if you are bedridden. Changes in bowel function: Many people find they have softer and more frequent bowel movements, and may need to go to the toilet immediately when they feel the urge. Bowel function usually becomes more normal and improves within a few months, however for some people, it can take several months. It may help to talk to a continence nurse or dietitian. Fatigue: When you are recovering from surgery, be sure to take your doctor s advice, and do only what is comfortable. Try to get plenty of rest. You may have to remind your family and friends that you are still recovering, even several months after surgery. Changes in your diet: See the following section for information about your diet after bowel surgery. Treatment 33

36 Diet after bowel surgery You don t have to follow a strict diet after bowel surgery, even if you have a colostomy. However, some foods are known to cause discomfort for people after surgery. Different types of food agree with different people, so you may need to experiment to determine what kinds of food are best for you. The changes to your bowel caused by surgery may make your bowel movements softer or gassier. Some foods produce wind, however, and these can contribute to increased flatulence. These foods include beans and peas; eggs; vegetables such as broccoli, brussel sprouts, cabbage, cauliflower, asparagus and onions; fried fish; some strong cheeses, milk; melons; nuts; beer; sugar; sweets and sweetened drinks. Charcoal tablets and yoghurt may help reduce wind. Some foods can also cause irritation or blockages in your large bowel. These include high-fibre foods such as oranges, strawberries and apples; raw vegetables such as coleslaw, salad greens and celery; some cooked vegetables such as spinach, green beans and corn; popcorn; nuts; coconut; highly seasoned foods; tomatoes; and food with seeds or kernels. 34 Cancer Council NSW

37 You may want to: Eat regular meals. Cut food into small pieces. Chew food slowly and thoroughly. Lumps of food may cause a mechanical blockage for people with a colostomy. Reintroduce one type of food at a time. If you experience any problems, avoid the food for two to three weeks then try it again. If you still have problems, you may want to avoid that food. Drink up to eight glasses of water or fruit juice a day to reduce constipation. Try to maintain a well-balanced diet so your body is nourished. You may have to trial different foods to see if they are helpful or problematic. If you have trouble eating a certain type of food, talk to a dietitian, who can help you find the best diet. Treatment 35

38 Chemotherapy Chemotherapy is the treatment of cancer with anti-cancer (cytotoxic) drugs. The aim of chemotherapy is to kill cancer cells while doing the least possible damage to healthy cells. Most people whose cancer is contained inside their bowel have surgery as their only treatment and usually don t need chemotherapy. Some people who have surgery have chemotherapy (and/or radiotherapy, see page 38) to shrink their tumour before surgical removal. This is called neoadjuvant therapy. Chemotherapy is often recommended for people whose bowel cancer has spread through the bowel wall or into the lymph nodes but no further. This is called adjuvant chemotherapy. If your cancer has spread to other organs, such as the liver or bones, chemotherapy may be used as palliative treatment (see page 40). Some people have surgery and then have chemotherapy afterwards. In most cases, you will have four to six weeks to recover from surgery, and you will start having chemotherapy treatment when your wounds are healed. Chemotherapy drugs are usually injected into a vein (given intravenously) or given in tablet form. Some people have a small medical appliance called a portacath or catheter installed beneath their skin through which they can receive chemotherapy. You will probably have sessions of chemotherapy over several weeks or months. Your medical team will determine your treatment schedule. 36 Cancer Council NSW

39 Side effects The side effects of chemotherapy vary according to the drugs used. Your doctor will talk to you about these side effects and how to manage them. You can also refer to the Cancer Council s free Understanding Chemotherapy book. Call for a copy. Some of these side effects include tiredness and lethargy; nausea and vomiting; diarrhoea; hair loss; hearing loss; mouth sores and ulcers; a tingly feeling in the hands or feet (possible nerve or muscle damage); and anaemia. Most side effects are temporary and there are ways to prevent or reduce them. Tell your doctor or nurse about side effects you experience. They may prescribe medication to manage the side effects, arrange a break in your treatment, or change the kind of treatment you are having. While having chemotherapy, you will be at a higher risk of getting an infection and bleeding in your bowel or other parts of your body. Tell your doctor if you are fatigued, or if you bruise or bleed easily. If you have a temperature over 38 o C, contact your doctor or nurse immediately and go straight to the hospital emergency department. Treatment 37

40 Radiotherapy Radiotherapy is the use of high-energy x-rays or electron beams to kill or damage cancer cells. Radiotherapy may be given before or after surgery, instead of surgery, or as palliative treatment (see page 40). During treatment, you will lie under a machine that delivers x-ray beams to the treatment area. Each treatment only takes a few minutes once it has started, but setting up the machine and seeing the radiation oncologist during your first treatment session may take a few hours. Radiotherapy is usually given in an outpatient treatment session once a day, Monday to Friday, for about five to seven weeks. The number of radiotherapy treatments you have will depend on your personal circumstances and your doctor s recommendation. Side effects Radiotherapy can cause temporary or permanent side effects. The side effects you experience will depend on your treatment schedule. Temporary side effects often appear when you are having treatment, but some may last a few months after treatment or permanently. Some temporary side effects of radiotherapy include: bleeding diarrhoea nausea tiredness or fatigue mild headaches urinary or faecal incontinence (see page 41) redness and soreness in the treatment area. 38 Cancer Council NSW

41 Your treatment team will advise you about how to manage temporary side effects. For example, you will need to take care washing and avoid shaving the treatment area or wearing clothing that can rub or chafe. Ask a member of your radiotherapy treatment team what type of skin care products to use. For men, radiotherapy to the pelvis may reduce sperm production or damage the sperm. This may be temporary or permanent. If you want to have children or are unsure what your plans are, you may be able to store sperm before treatment starts. Some doctors suggest that men try to avoid conceiving naturally for six months after radiotherapy treatments have finished. For women, radiotherapy may lead to damage and shrinking of the vagina and premature menopause, which can cause infertility. You may feel devastated if you are no longer able to have children and may worry about the impact of this on your relationship. Even if your family is complete, you may have mixed emotions about experiencing menopause. Talking to your partner, speaking to a counsellor or talking to a specialist about your options can help. You may also refer to the Cancer Council s booklet, Understanding Radiotherapy, for information about treatment and side effects. For information about infertility, call the Cancer Council Helpline on for a free copy of a booklet about sexuality for men or women. Treatment 39

42 Palliative treatment Palliative treatment helps improve quality of life by alleviating symptoms of cancer without trying to cure the disease. It is particularly important for people with advanced cancer. Often treatment is concerned with pain relief and stopping the spread of cancer, but it can also involve the management of other physical and emotional symptoms. Treatment may include radiotherapy, chemotherapy and other medication. Palliative treatment can help with pain and symptom management it is not just for people who are about to die. 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 www. cancercouncil.com.au. 40 Cancer Council NSW

43 Changes to bowel habits After treatment for bowel cancer, most people have changed bowel habits. You may experience incontinence or have a temporary or permanent stoma. Incontinence People who have faecal or bowel incontinence involuntarily or accidentally lose control of their wind and bowel movements. Urinary incontinence occurs when a person loses control of their bladder function. It is common to have incontinence after bowel cancer treatment. For example, radiotherapy to the abdomen can irritate the lining of your bladder, which is near your large bowel. This can cause temporary urinary incontinence. Rectal cancer can also invade the muscles of the large bowel, which can cause bowel incontinence. Some people who are incontinent feel embarrassed or ashamed. Talk to your health care team about whether or not the changes to your bowel or bladder habits are permanent. There are ways to treat or manage incontinence. Changes to bowel habits 41

44 Tips for dealing with incontinence If you occasionally soil yourself, carry an extra pair of underwear and some cleansing wipes. Wear a pad or disposable undergarment. Go to the toilet frequently, to empty your bladder or bowels. This may prevent leakage. Ask your doctor if there are any medications to treat incontinence. Ask a dietitian about changes to your diet that may improve your incontinence. Visit to locate public toilets. The Continence Foundation of Australia can provide additional information and support about dealing with incontinence. Go to or call the National Continence Helpline on Cancer Council NSW

45 Having a stoma After treatment for bowel cancer, some people need a temporary or permanent stoma (also called an ostomy). A permanent stoma is required in less than 10% of cases. Usually, a temporary stoma is only necessary for about three months. If the surgeon removes the cancerous tissue and is unable to re-connect the bowel, they will need to create a way to remove waste from the body. The surgeon creates a small hole in the abdomen and brings an end of the bowel out through the hole. The bowel is attached to the skin to create a stoma. Stomas can vary in size, but are usually about the size of a 20 cent coin. A stoma is soft, moist and red or pink in colour and is made of the same type of tissue as the inside of the mouth. It may be level with your skin or raised slightly. The stoma itself doesn t have feeling, but the skin it around does. The most common type of stoma is a colostomy, which is a stoma from an opening in the colon. Colostomy stomach colon ileum opening of the colon onto the surface of the skin to form the stoma Changes to bowel habits 43

46 Colostomy bags When the bowel acts, wind and waste material (faeces) come out through your stoma. A small, disposable, flat plastic bag collects this waste. This is called a colostomy bag. Colostomy bags have adhesive on the back, so they should stick firmly to the skin around the stoma and provide a leak-proof, odour-proof system. They are usually not visible under clothing. In humid weather or during vigorous physical activity, you may have to use extra glue to ensure the stoma bag does not fall off. When the bag is full, you will have to discard it and fit a new bag to the stoma. Stomal therapy nurses If there is a chance you could need a stoma, the surgeon will probably ask a stomal therapy nurse to talk to you before surgery, to discuss the best place for it to be located. Stomal therapy nurses have specialist training and will answer your questions about the surgery. They can also provide information about adjusting to life with a stoma, including how you can look after your stoma when you are out of hospital. If you are not referred to a stomal therapy nurse, talk to your surgeon or GP. You can also talk to an ostomy association (see page 46) or call the Cancer Council Helpline for a referral. My colostomy bag came adrift a few times. I quickly learned to carry with me a stoma bag replacement kit, in case of emergency. 44 Cancer Council NSW

47 Adapting to life with a stoma Having a stoma, even temporarily, is a big change in a person s life and takes some adjustment. However, thousands of Australians have a stoma and most lead a relatively normal life. You can discuss changes to aspects of your everyday life with a stomal therapy nurse. Having a stoma may sometimes impact on your travel plans, sexual relationships and social life. Your stomal therapy nurse can provide you with advice and written material. You may also benefit reading the Cancer Council s free booklet, Sexuality for People with a Stoma. Call for a free copy. Your family may also need information and support, and can be included in discussions with the stomal therapy nurse. Changes to bowel habits 45

48 Support for people with a stoma A stomal therapy nurse may suggest that you join a stoma association, which has a number of benefits. The Australian Government has a Stoma Appliance Scheme, which supplies free stoma supplies, such as colostomy bags and bag glue, to Medicare cardholders with a temporary or permanent stoma who belong to a stoma association. Visit the Australian Government s Department of Health and Ageing website at and type Stoma Appliance Scheme into the search box for more information. You can also contact the Ileostomy Association of NSW on (02) or the Colostomy Association of NSW on (02) The other benefit of being a member of a stoma organisation is that you will be able to get in touch with other people who have a stoma. Talking to someone who also has a stoma may help you adapt to having a stoma. 46 Cancer Council NSW

49 Making treatment decisions Sometimes it is difficult to decide on the right treatment. You may feel that everything is happening so fast you don t have time to think things through, but 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. You always have the right to find out what a suggested treatment means for you, and the right to accept or refuse it. Some people with more advanced 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 so they have the best possible quality of life. Some people choose treatment options that don t try to cure the cancer, but instead make them feel as well as possible. Making treatment decisions 47

50 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, it may be helpful to 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 available to you speak to your doctor, consider getting a second opinion, look at the recommended Internet sites on page 66, and talk to your family and friends and to 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. 48 Cancer Council NSW

51 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 69. 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. Making treatment decisions 49

52 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 doctor giving the second opinion. You may later decide you would prefer to be treated by the doctor who provided the second opinion, and you are within your rights to make this choice. You can ask for a second opinion even if you have already started treatment or still want to be treated by your first doctor. 50 Cancer Council NSW

53 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 a clinical 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 part of 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. Making treatment decisions 51

54 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. Addressing changes in your emotions and challenges in your relationships is also very important. The following sections may be relevant to you during your treatment and convalescence, and after your recovery. Healthy eating Eating nutritious food will help you keep as well as possible and cope with the cancer and treatment side effects. Depending on your treatment, you may have special dietary needs. For example, people who have bowel surgery may tolerate certain foods better than others (see pages 34 to 35). 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. 52 Cancer Council NSW

55 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 and muscle pain, elevate mood and regulate bowel movements. The amount and type of exercise you do will depend on what you are used to, how well you feel and what your doctor advises. 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 or weight-bearing exercise, ask your doctor what is best for you and ensure you build up your activity levels gradually. Relaxation techniques Some people find relaxation or meditation helps them feel better by releasing tension and anxiety. Relaxation exercises may 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 Helpline to access these resources. Looking after yourself 53

56 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. Be sure to let your doctor know about any complementary therapies you are using or thinking about trying. This is important, as some therapies may not be appropriate, depending on your conventional treatment. For example, some herbs and nutritional supplements may interact with your medication, resulting in harmful side effects. Massage and exercise therapies may also need to be modified to accommodate the changes in your body. For further information, call the Helpline on for a copy of the Cancer Council s Understanding Complementary Therapies booklet. 54 Cancer Council NSW

57 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 discuss how you both feel about the situation. Looking after yourself 55

58 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 and you need to wear a colostomy or ileostomy bag. However, even if your body has not changed significantly, 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 Look Good Feel Better is a program that teaches ways to help restore self image and appearance during treatment. Call body, mind and personality) can help to increase your self-esteem. 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. 56 Cancer Council NSW

59 Sexuality, intimacy and cancer The role of sexuality and intimacy depends on a person s age, environment, health, relationships, culture, beliefs and interests. Cancer can affect your sexuality in both physical and emotional ways. The impact of these changes depends on many factors, such as treatment and 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 will help you overcome or adjust to these changes. Sexual intercourse may not always be possible during or after treatment for cancer, 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. Contraception If you are having chemotherapy and you have sexual intercourse within 48 hours of treatment, you should use a condom or a female condom as a precaution against transferring any chemicals to your partner. It is also important to avoid pregnancy, as the chemicals could harm the unborn baby. Some form of contraception must be used. Talk to your doctor about how these issues affect you and for advice on contraception. See also the Cancer Council s booklet Understanding Chemotherapy for further information. Looking after yourself 57

60 Life after treatment Many people are surprised to discover that life after treatment presents its own challenges. Although you might feel pressure to get back to your normal life, it s important to remember that your life may not return to how it was before cancer. Give yourself time to adjust to physical and emotional changes. You may not be fit enough to do your usual activities around the house. If you re returning to work, you should ease back into it slowly, rather than rushing back the week after leaving hospital. After treatment, it is common to feel anxious rather than more secure. During treatment, you are busy with appointments and focused on treatment, but after treatment, you may feel you face an uncertain future. For some people, fear of cancer returning can feel like a shadow on their life. You might worry about every ache and pain and wonder if it is the cancer coming back. Making sure you have regular checkups, and talking to your doctor about what to expect if the cancer comes back may reassure you. 58 Cancer Council NSW

61 Many people say that after cancer they have a new perspective and see life with a new clarity. Your priorities may change. For example, you may decide to spend more time with family and friends, start a new hobby, travel or get involved in advocacy or volunteer work. Everyone will eventually re-establish a daily routine, but it will be at their own pace and may be different to how things were in the past. It may take some time to balance the need to have regular checkups with resuming day-to-day activities and making plans for the future. Talking to someone who has had bowel cancer may help you deal with uncertainties or challenges. For more information see page 63. If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, it is important to talk to your doctor, as you may be depressed. Counselling and prescribed medication may help you. If you need help around the house, ask your friends and family, or ask for a referral to a hospital social worker. Looking after yourself 59

62 What if the bowel cancer returns? When there are no signs of active cancer cells in your body, this is called remission, but it is possible for bowel cancer to return after successful treatment. This is known as a relapse. It is important to closely monitor your health and have regular checkups with your doctor. If you experience any changes in your bowel patterns, talk to your doctor immediately. If you have a follow-up appointment, your doctor may perform some of the diagnostic tests described on pages 13 to 23. If cancer is detected, you can decide if you would like to have treatment. Chemotherapy and radiotherapy are common treatments for recurrent bowel cancer. Some people have further surgery. Sometimes bowel cancer spreads to other organs in the body. This is called secondary bowel cancer. If you have treatment for secondary bowel cancer, it may target the other part of your body experiencing symptoms (such as the liver). For information about treating secondary bowel cancer, call the Cancer Council Helpline on I really felt alone when the treatments were finished and worried about the cancer coming back. This is when talking to a former bowel cancer patient is so important. 60 Cancer Council NSW

63 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 counsellor, social worker or psychologist your religious or spiritual adviser a support group see page 63 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. 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. 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 offers of help. The Cancer Council s booklet Emotions and Cancer may help at this stressful time. Call for a copy or download it from the Cancer Council s website, Seeking support 61

64 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 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. 62 Cancer Council NSW

65 Talk to someone who s been there Getting in touch with other people who have been through a similar experience can be very beneficial. There are many ways to contact 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 telephone support groups for certain situations or types of cancer, which trained counsellors facilitate 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. Go to or call the Helpline to access the Cancer Services Directory, join an online discussion and find out how you can connect with others. Seeking support 63

66 Cancer Council Helpline Monday to Friday 9am to 5pm The Cancer Council Helpline is a telephone information service provided by the Cancer Council NSW for people affected by cancer. For the cost of a local call, you can talk about your concerns and needs confidentially with oncology health professionals. Helpline consultants can send you written information and put you in touch with appropriate services in your area. You can also request services in languages other than English. You can call the Cancer Council Helpline, Monday to Friday, 9am to 5pm. If calling outside business hours, you can leave a message and your call will be returned the next business day. If you have difficulty communicating over the phone, contact the National Relay Service, a government initiative to assist people who are hearing and/or speech impaired ( This service will help you to communicate with a Cancer Council Helpline consultant. 64 Cancer Council NSW

67 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. Caring for my mum was deeply emotional. It was difficult, but it gave me a tremendous sense of caring and giving. Seeking support 65

68 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 Cancer Council NSW... Cancer Council Australia... Cancer Institute NSW... Health Insite an Australian Government initiative... Commonwealth Department of Health and Ageing... NSW Health... Australian Association of Stomal Therapy Nurses... Continence Foundation of Australia... National Public Toilet Map... National Cancer Screening Programs... International American Cancer Society... Macmillan Cancer Support... US National Cancer Institute Cancer Council NSW

69 Cancer information library Following a cancer diagnosis, many people look for information about new types of treatment, the latest research findings, and stories about how other people have coped. The Cancer Council 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. Contact the librarian on or library@nswcc.org.au. Seeking support 67