Esophageal Cancer. Understanding your diagnosis

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1 Esophageal Cancer Understanding your diagnosis

2 Esophageal Cancer Understanding your diagnosis When you first hear that you have cancer, you may feel alone and afraid. You may be overwhelmed by the large amount of information you have to take in and the decisions you need to make. All I could hear was cancer. I heard my doctor say something like, We re going to try and get the surgery done as soon as possible. I didn t hear one word after that. The introductory information in this brochure can help you and your family take the first steps in learning about esophageal cancer. A better understanding may give you a sense of control and help you work with your healthcare team to choose the best care for you. For more information The information in this brochure gives an introduction to esophageal cancer. More in-depth information is available on cancer.ca. You can also call our Cancer Information Service at to learn more about cancer, diagnosis, treatment, support and the services we offer. What is cancer? Cancer is a disease that starts in our cells. Our bodies are made up of millions of cells, grouped together to form tissues and organs such as muscles and bones, the lungs and the liver. Genes inside each cell order it to grow, work, reproduce and die. Normally, our cells obey these orders and we remain healthy. But sometimes the instructions in some cells get mixed up, causing them to behave abnormally. These cells grow and divide uncontrollably. After a while, groups of abnormal cells form lumps, or tumours. Tumours can be either benign (non-cancerous) or malignant (cancerous). Benign tumour cells stay in one place in the body and are not usually life-threatening. Malignant tumour cells are able to invade nearby tissues and spread to other parts of the body. It s important to find and treat malignant tumours as early as possible. In most cases, finding cancer early increases the chances of successful treatment. Cancer cells that spread to other parts of the body are called metastases. The first sign that a malignant tumour has spread (metastasized) is often swelling of nearby lymph nodes, but cancer can spread to almost any part of the body. Cancers are named after the part of the body where they start. For example, cancer that starts in the esophagus but spreads to the liver is called esophageal cancer with liver metastases. Cover photograph: Getty Images Licensed material is for illustrative purposes only; persons depicted are models. 1

3 What is esophageal cancer? Esophageal cancer starts in the cells of the esophagus. The esophagus is a hollow, muscular tube that carries food and drink from the back of your mouth down to your stomach. It s located behind your windpipe and in front of your spine. When you swallow, the muscles of the esophagus tighten to push food down to your stomach. The esophagus joins the stomach at an area called the gastroesophageal (GE) junction. The muscle at this junction opens to let food into the stomach. This muscle normally stops the stomach acid from flowing back up into the esophagus and causing heartburn. Having gastric reflux for years can cause Barrett s esophagus. Gastric reflux is when stomach acid flows up into the esophagus and causes heartburn. Most people with chronic gastric reflux don t develop Barrett s esophagus. But a person diagnosed with Barrett s esophagus has a very high risk of cancer if it isn t treated. Cancer of the esophagus can start anywhere along the length of the esophagus. There are two main types of esophageal cancer. Each one starts in a different kind of cell. Squamous cell carcinoma starts in the squamous cells that line the esophagus. These cancers usually develop in the upper and middle part of the esophagus. Adenocarcinoma starts in the glandular cells in the lower part of the esophagus. Treatment is similar for both types of esophageal cancer. Before esophageal cancer develops, the cells of the esophagus start to change and become abnormal. These abnormal cells are precancerous this means they aren t cancer. Having these precancerous cells in the esophagus is called Barrett s esophagus. Diagnosing esophageal cancer Your doctor may suspect you have esophageal cancer after taking your medical history and doing a physical examination. To confirm the diagnosis, your doctor will arrange special tests. These tests may also be used to stage the cancer and to help plan treatment. Symptoms of esophageal cancer: Cancer of the esophagus often doesn t cause any signs or symptoms in its early stages. Most people don t have symptoms until the tumour blocks the esophagus, making it hard to swallow. 2 Esophageal Cancer: Understanding your diagnosis Canadian Cancer Society

4 The most common signs and symptoms of esophageal cancer include: difficult or painful swallowing weight loss pain in the throat, chest (behind the breastbone) or back heartburn or indigestion feeling very tired loss of appetite nausea or vomiting hoarseness or coughing Other health problems can cause some of the same symptoms. Your doctor will do one or more of the following tests to make a diagnosis. Imaging studies: Imaging studies allow tissues, organs and bones to be looked at in more detail. Using x-rays, ultrasounds, CT scans, MRIs or bone scans, your healthcare team can get a picture of the size of the tumour and see if it has spread. These tests are usually painless, and you don t need an anesthetic (freezing). You may have a series of x-rays of the esophagus and stomach called an upper gastrointestinal (GI) series, or a barium swallow. You will drink a thick, chalky liquid called barium. The barium coats the inside of the esophagus, stomach and small intestine and helps them show on the x-ray. The doctor looks for any changes in the esophagus on the x-ray. If there are signs of cancer, the doctor also looks to see if it has spread to the stomach. Esophageal endoscopy: Esophageal endoscopy uses a thin, flexible tube with a light at the end (called an endoscope). The tube goes into your mouth and down your throat to look inside the esophagus. Before an endoscopy, a mild anesthetic (freezing) may be sprayed on your throat. You may also get a mild sedative to help you relax. After the endoscopy, your throat will be sore this is normal and lasts only a couple of days. Biopsy: A biopsy is usually needed to make a definite diagnosis of cancer. Cells are taken from the body and checked under a microscope. If the cells are cancerous, they are studied to see how fast they are growing. An endoscopic biopsy is commonly used to diagnose esophageal cancer. If an abnormal area is found during the endoscopy, the doctor takes samples of tissue through the endoscope. Blood tests: Blood is taken and studied to see if the different types of blood cells are normal in number and appearance. The results show how well your organs are working and may suggest whether you have cancer and if it has spread. Further testing: Your doctor may order more tests to find out if the cancer has spread and to help plan your treatment. 4 Esophageal Cancer: Understanding your diagnosis Canadian Cancer Society

5 Will I be okay? Most people with cancer want to know what to expect. Can they be cured? A prognosis is your doctor s best estimate of how cancer will affect you and how it will respond to treatment. A prognosis looks at many factors, including: the type, stage and grade of cancer the location of the tumour and whether it has spread your age, sex and overall health Even with all this information, it can still be very hard for your doctor to say exactly what will happen. Each person s situation is different. Your doctor is the only person who can give a prognosis. Ask your doctor about the factors that affect your prognosis and what they mean for you. Staging Once a definite diagnosis of cancer has been made, the cancer is given a stage. This information helps you and your healthcare team choose the best treatment for you. The cancer stage describes the tumour size and tells whether it has spread. For esophageal cancer, there are five stages. * Stage Description 0 Cancer cells are only in the innermost layer of the lining of the esophagus. Stage 0 is also called carcinoma in situ. 1 Cancer has spread beyond the innermost layer of cells to the next layer of tissue in the wall of the esophagus. 2 Cancer has spread to deeper layers of the esophagus or to nearby lymph nodes. It has not spread to other parts of the body. 3 Cancer has spread more deeply into the wall of the esophagus or to tissue or lymph nodes near the esophagus. It has not spread to distant parts of the body. 4 Cancer has spread within the esophagus. It has also spread to lymph nodes or to other parts of the body (such as the liver, lungs, brain or bones), or to both. * This table summarizes the stages of esophageal cancer according to the TNM system used by the American Joint Committee on Cancer (AJCC) and the Union for International Cancer Control (UICC). For more in-depth information, please visit cancer.ca. 6 Esophageal Cancer: Understanding your diagnosis Canadian Cancer Society

6 Treatments for esophageal cancer Your healthcare team considers your general health and the type and stage of the cancer to recommend the best treatments for you. You ll work together with your healthcare team to make the final treatment choices. Talk to them if you have questions or concerns. Some treatments for esophageal cancer may make your mouth sensitive and may increase your risk of infection. It s important to see your dentist and get dental work done before starting treatment. For esophageal cancer, you might receive one or more of the following treatments. Surgery: Surgery is the most common treatment for esophageal cancer. Surgery may be advised depending on the size and location of the tumour as well as your general health. Surgery is done under general anesthetic (you will be unconscious). You may stay in the hospital for a week or longer after the surgery. There are different types of surgery for cancer of the esophagus. An operation to remove all or part of the esophagus is called an esophagectomy. How much of the esophagus is removed depends on the stage of the cancer, the location of the tumour and whether or not it has spread. The surgeon will remove the tumour and some healthy tissue around it as well as nearby lymph nodes. Part or all of the stomach may be removed too. If only the upper part of the stomach is removed, the surgeon will pull up the stomach and connect it to the healthy part of the esophagus. If that s not possible, some of the intestine will be used to make a new esophagus. If the tumour cannot be removed and is blocking the esophagus, a hollow tube (called a stent) may be put in the esophagus to keep it open. This makes eating and swallowing easier. During the recovery period after surgery, you may need help with: Breathing: You may need a ventilator (respirator) for a short time to help you breathe. Your healthcare team can teach you special breathing exercises to help you keep your lungs clear of fluid. Drainage: Drainage tubes may be inserted into your chest to remove fluids that collect around the lungs. These are removed a few days after surgery. Eating: After surgery, you may have an intravenous (IV) drip into a vein or a feeding tube in your nose or abdomen to give you liquids and nutrients. Swallowing tests are done to make sure the area where the esophagus now joins the stomach is healing. After a few days of healing, you may be able to start drinking and eating soft foods on your own. 8 Esophageal Cancer: Understanding your diagnosis Canadian Cancer Society

7 Chemotherapy: Chemotherapy uses drugs to treat cancer. Chemotherapy drugs may be given as pills or by injection. They interfere with the ability of cancer cells to grow and spread, but they also damage healthy cells. Although healthy cells can recover over time, you may experience side effects from your treatment including nausea, vomiting, diarrhea, hair loss, fatigue and loss of appetite. Most side effects go away after treatment is finished, but some may last a long time or be permanent. Chemotherapy may be given with radiation therapy (chemoradiation) when treating esophageal cancer, or it may be given on its own. Side effects may be more severe when radiation and chemotherapy are combined. Chemotherapy may also be used before or after surgery. Radiation therapy: Radiation therapy for esophageal cancer may include two types of treatments. In external beam radiation therapy, a large machine is used to carefully aim a beam of radiation at the tumour. The radiation damages the cells in the path of the beam normal cells as well as cancer cells. In brachytherapy, or internal radiation therapy, radioactive material is placed directly into or near the tumour. Radiation side effects depend on the part of the body that receives the radiation and the dose. You may have a dry or sore mouth and throat, have trouble swallowing, feel more tired than usual or notice changes to the skin (it may be red or tender) where the treatment was given. Radiation may be given with or without chemotherapy and may be used before or after surgery. Endoscopy: While endoscopy is used to diagnose esophageal cancer, it is also sometimes used to treat it. During surgery, an endoscopy can help remove or destroy tissue. With photodynamic therapy (PDT), an endoscope delivers low-intensity laser light to activate drugs that destroy the cancer cells. When treating advanced cancer, an endoscope may be used to open up the esophagus. For more information on treatment, you may want to read our booklets Chemotherapy and Other Drug Therapies and Radiation Therapy. Clinical treatment trials: Clinical treatment trials investigate new approaches to treating cancer. They provide information about the safety and effectiveness of new drugs, types of treatment or new combinations of existing treatments. Clinical treatment trials are closely monitored to make sure that they are safe for the participants. Ask your doctor if any clinical trials are available as a suitable treatment option for you. It s up to you to participate you may benefit and so may future cancer patients. For more information on clinical trials, including information on how to find one, you may want to read our booklet Clinical Trials. 10 Esophageal Cancer: Understanding your diagnosis Canadian Cancer Society

8 Complementary therapies: Complementary therapies for example, massage therapy or acupuncture are used together with conventional cancer treatments, often to help ease tension and stress, as well as other side effects of treatment. They don t treat the cancer itself. More research is needed to understand if these therapies are effective and how they work. Alternative therapies are used instead of conventional treatments. Alternative therapies haven t really been tested enough for safety or effectiveness. Using alternative treatments alone for cancer may have serious health effects. If you re thinking about using a complementary or alternative therapy, find out as much as you can about the therapy and talk to your healthcare team. It s possible that the therapy might interfere with test results or regular treatments. For more information on complementary therapies, you may want to read our booklet Complementary Therapies. Side effects of treatment: Some cancer treatments cause side effects, such as fatigue, hair loss or nausea. Because treatments affect everyone differently, it s hard to predict which side effects if any you may have. Side effects can often be well managed and even prevented. If you re worried about side effects, tell your healthcare team about your concerns and ask questions. They can tell you which side effects you should report right away and which ones can wait until your next appointment. If you notice any side effects or symptoms that you didn t expect, talk to a member of your healthcare team as soon as possible. They ll help you get the care and information you need. After treatment Follow-up care helps you and your healthcare team monitor your progress and your recovery from treatment. At first, your follow-up care may be managed by one of the specialists from your healthcare team. Later on, it may be managed by your family doctor. The schedule of follow-up visits is different for each person. You might see your doctor more often in the first year after treatment and less often after that. After treatment has ended, you should report new symptoms that don t go away to your doctor without waiting for your next scheduled appointment. Maintaining a healthy diet: After treatment for esophageal cancer, you may need to make changes to your diet and your eating habits. You ll need to eat several small meals and snacks throughout the day, rather than eating three large meals. It s important to eat well so that you get enough calories and protein to control weight loss and maintain your strength. This can be very hard if you re having trouble swallowing or have problems with digestion. Ask your healthcare team for more information on how to maintain a healthy diet. 12 Esophageal Cancer: Understanding your diagnosis Canadian Cancer Society

9 Self-image and sexuality: It s natural to be concerned about the effects of esophageal cancer and its treatment on your sexuality. You may be concerned about how your body looks and how it works after treatment. And you may worry about having sex with a partner or that you may be rejected. It may help to talk about these feelings with someone you trust. Your doctor can also refer you to specialists and counsellors who can help you with the emotional side effects of esophageal cancer treatment. For more information on sexuality, you may want to read our booklet Sexuality and Cancer. The end of cancer treatment may bring mixed emotions. You may be glad the treatments are over and look forward to returning to your normal activities. But you might feel anxious as well. If you re worried about the end of your treatment, talk to your healthcare team. They re there to help you through this transition period. Living with cancer For resources on living with cancer, you may want to read our booklet Living with Cancer. Many sources of help are available for people with cancer and for their caregivers. Your healthcare team: If you need practical help or emotional support, members of your healthcare team may be able to suggest services in your community or refer you to cancer centre staff or mental health professionals. Family and friends: People closest to you can be very supportive. Accept offers of help. When someone says, Let me know how I can help, tell them what they can do. Maybe they can run errands, cook a meal or give you a ride to your doctor s office. People who ve had similar experiences: Talking with and learning from others who ve had similar experiences can be helpful. Consider visiting a support group or talking with a cancer survivor in person, over the telephone or online. Try more than one option to see which one works best for you. Yourself: Coping well with cancer doesn t mean that you have to be happy or cheerful all the time. But it can mean looking after yourself by finding relaxing, enjoyable activities that refresh you mentally, spiritually or physically. Take some time to find coping strategies to help you through this experience. You may also want to talk to a counsellor for more help. 14 Esophageal Cancer: Understanding your diagnosis Canadian Cancer Society

10 Connecting with someone who s had a similar cancer experience We can help you connect with a trained volunteer who s been through a similar cancer experience. Our telephone support program is available everywhere in Canada, and we also offer in-person and group support in many locations. To find out more about what s available in your area, you can: Call our toll-free Cancer Information Service at (TTY: ) Monday to Friday, 9 a.m. to 6 p.m. us at Visit our website at cancer.ca. Want to connect with someone online? If you d like to connect with someone online, join our online community, CancerConnection.ca. There are discussions, blogs and groups that may interest you, and you ll find caring, supportive people there. What causes esophageal cancer? There is no single cause of esophageal cancer, but some factors increase the risk of developing it. Some people can develop esophageal cancer without any risk factors, while others who have these factors do not get it. Risk factors for esophageal cancer include: smoking or chewing tobacco drinking alcohol, especially if you also use tobacco GERD (gastroesophageal reflux disease) and Barrett s esophagus having had other cancers in the head, neck or digestive system exposure to radiation being underweight, overweight or obese family history Most people diagnosed with esophageal cancer are over the age of 60. Men are more likely to be diagnosed with it than women. The Canadian Cancer Society Helping you understand cancer Now that you know the basics of esophageal cancer, you may want to learn more. Please contact us for more in-depth information and support. Our services are free and confidential. To contact the Canadian Cancer Society: Call an information specialist toll-free at (TTY: ) Monday to Friday, 9 a.m. to 6 p.m. us at Visit our website at cancer.ca. Contact your local Canadian Cancer Society office. We d like to hear from you us at if you have comments or suggestions to help us make this brochure more useful for you and other readers. 16 Esophageal Cancer: Understanding your diagnosis

11 What we do The Canadian Cancer Society fights cancer by: doing everything we can to prevent cancer funding research to outsmart cancer empowering, informing and supporting Canadians living with cancer advocating for public policies to improve the health of Canadians rallying Canadians to get involved in the fight against cancer Contact us for up-to-date information about cancer, our services or to make a donation. This is general information developed by the Canadian Cancer Society. It is not intended to replace the advice of a qualified healthcare provider. The material in this publication may be copied or reproduced without permission; however, the following citation must be used: Esophageal Cancer: Understanding your diagnosis. Canadian Cancer Society Canadian Cancer Society 2012 Printed November

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