Understanding Thyroid Cancer

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  • 1. Understanding Thyroid Cancer A guide for people with cancer, their families and friends.
  • 2. Understanding Thyroid Cancer A guide for people with cancer, their families and friends. First published October 2008. © Cancer Council New South Wales 2008. ISBN 978-1-921041-78-5 Acknowledgements We thank the reviewers of this booklet: Dr Mark Sywak, Endocrine Surgeon, University of Sydney Endocrine Surgical Unit; Kathy Chapman, Nutrition Program Manager, Cancer Council NSW; Dr Jonathan Clark, Head and Neck Surgeon, Sydney Head and Neck Cancer Institute; Professor Leigh Delbridge, Professor of Surgery and Head of Academic Surgery, University of Sydney and Royal North Shore Hospital (Australian Thyroid Foundation Patron); Victoria Dolphin, Helpline Program Coordinator, Cancer Council NSW; Camille Formston, Head and Neck Cancer Nurse Coordinator, Royal North Shore Hospital; Clare Kahn, Research Assistant, Pathways to the Diagnosis of Thyroid Cancer in NSW Study, Cancer Council NSW; Nicole Kiss, Oncology Dietitian, Peter MacCallum Cancer Centre; Dr Shaun McGrath, Endocrinologist and Visiting Medical Officer, John Hunter Hospital; Vanessa Morn, Consumer and Social Worker, Centrelink; Professor Bruce Robinson, Dean of Medicine, University of Sydney, Professor of Medicine, Royal North Shore Hospital (Australian Thyroid Foundation Patron). Cancer Council NSW wishes to acknowledge the following sources of information in this booklet: British Thyroid Association, Royal College of Physicians. Guidelines for the management of thyroid cancer (Perros P ed) , 2nd edition. Report of the Thyroid Cancer Guidelines Update Group. London: Royal College of Physicians, 2007; Mayo Clinic/Mayo Foundation for Medical Education and Research; and MacMillan Cancerbackup. Writer and Editor: Laura Wuellner. Cartoonist: 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 1300 780 113 or visit Cancer Council’s website at www.cancercouncil.com.au. 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: 13 11 20 Telephone: (02) 9334 1900 Facsimile: (02) 9334 1741 Email: feedback@nswcc.org.au Website: www.cancercouncil.com.au
  • 3. Introduction This booklet has been prepared to help you understand more about thyroid cancer. Many people feel understandably shocked and upset when told they have thyroid cancer. We hope this booklet will help you understand how thyroid 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 on this booklet to your family and friends for their information. This booklet does not need to be read from cover to If you’re reading this booklet cover – just read the parts for someone who doesn’t that are useful to you. understand English, contact the Cancer Council Helpline for Some medical terms that may services available in different be unfamiliar are explained languages (see page 51). in the glossary. Introduction 1
  • 4. Contents What is cancer? ............................................................................................................... 4 The thyroid gland ........................................................................................................ 6 What is thyroid cancer? 8 ................................................................................... What are the symptoms? ................................................................................................... 9 Causes of thyroid cancer .................................................................................................. 10 How common is it? ................................................................................................................. 11 Diagnosis .................................................................................................................................. 12 Blood test .......................................................................................................................................... 12 Ultrasound ........................................................................................................................................ 13 Biopsy .................................................................................................................................................... 13 Radioisotope scan .................................................................................................................... 14 Further scans ................................................................................................................................. 15 Staging thyroid cancer ......................................................................................................... 18 Prognosis ........................................................................................................................................... 18 Which health professionals will I see? .............................................................. 19 Treatment and side effects ..................................................................... 20 Surgery ................................................................................................................................................. 20 Radioactive iodine treatment ....................................................................................... 26 External radiotherapy ............................................................................................................ 29 Chemotherapy .............................................................................................................................. 31 Palliative treatment ................................................................................................................. 32 2 Cancer Council NSW
  • 5. Making treatment decisions ................................................................ 33 Decision-making steps ....................................................................................................... 34 Talking with doctors ............................................................................................................... 35 Talking with others .................................................................................................................. 35 A second opinion ....................................................................................................................... 36 Taking part in a clinical trial ............................................................................................. 37 Looking after yourself ...................................................................................... 38 Healthy eating ............................................................................................................................... 38 Being active ..................................................................................................................................... 39 Complementary therapies .............................................................................................. 40 Strengthening your relationships ............................................................................ 41 Changing body image .......................................................................................................... 42 Sexuality, intimacy and cancer ................................................................................... 43 Life after treatment ................................................................................................................. 44 Seeking support ........................................................................................................... 48 Practical and financial help ............................................................................................. 49 Understanding Cancer program ............................................................................... 49 Talk to someone who’s been there ....................................................................... 50 Cancer Council Helpline .................................................................................................... 51 Caring for someone with cancer ............................................................................. 52 Information on the Internet ........................................................................................... 52 Cancer information library ............................................................................................... 54 Question checklist .................................................................................................... 56 Glossary ...................................................................................................................................... 57 How you can help .................................................................................................... 64 Regional offices ............................................................................................................ 65 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 this process goes wrong and cells grow in an uncontrolled way. This uncontrolled growth may result in abnormal blood cells or 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 Malignant or multiply invasive cancer Boundary Lymph vessel Cancer Council Victoria © Blood vessel Some benign tumours are precancerous and may progress to cancer if left untreated. Other benign tumours do not develop into cancer. 4 Cancer Council NSW
  • 7. How cancer spreads Primary cancer Local invasion Angiogenesis – tumours grow their own blood vessels Lymph vessel Boundary Metastasis – cells move away from the primary tumour and invade other parts of Cancer Council Victoria © 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, thyroid cancer that has spread to the lymph nodes is still called thyroid cancer, even though the person may be experiencing symptoms caused by problems in the lymph nodes. What is cancer? 5
  • 8. The thyroid gland The thyroid is a butterfly-shaped gland located at the base of the neck, below the larynx (voice box or Adam’s apple). The two halves of the thyroid, called lobes, lie on the sides of the trachea (windpipe). The lobes are connected by a small band of tissue called the isthmus. The thyroid gland is part of Metabolism is the chemical the endocrine system, the system process that allows cells to of the body that is responsible grow, reproduce, respond for producing hormones. to their environment and Hormones are the chemical stay alive. Metabolic processes occur messages in the body that simultaneously, and they transfer information between are regulated by glands cells. The thyroid produces such as the thyroid. hormones that control the body’s metabolism. The three hormones released by the thyroid are: 1. Thyroxine (T4): One of the hormones that regulates the body’s metabolism. T4 is converted into another hormone, called T3. 2. Tri-idothyronine (T3): The second type of hormone that controls metabolism. The thyroid produces only small amounts of T3 – the majority of this hormone is created when the body converts T4 into T3. T3 is the active form of the thyroid hormone. 3. Calcitonin: A hormone that plays a role in regulating a person’s bone metabolism. The thyroid uses iodine (which is present in foods or mineral supplements) to create T4 and T3. 6 Cancer Council NSW
  • 9. The thyroid gland is made up of two main types of cells: follicular cells create a protein and produce and store T3 and T4, and parafollicular cells (C-cells) produce calcitonin. Follicular and C-cells can give rise to different types of thyroid cancer (see page 8). The parathyroid glands – four glands that sit behind the thyroid and produce hormones that maintain the body’s calcium and phosphorus balance – can also become cancerous. This is rare, however, and is not discussed in this booklet. Call the Cancer Council Helpline on 13 11 20 for information about parathyroid cancer. The thyroid gland Larynx Cartilage Thyroid Isthmus Lobes Trachea Back of thyroid Parathyroids The thyroid gland 7
  • 10. What is thyroid cancer? Thyroid cancer occurs when the cells of the thyroid gland grow and divide in a disorderly way. There are four main types of thyroid cancer discussed in this booklet: 1. Papillary thyroid cancer is the most common type of thyroid cancer, representing about 70% of all cases. This type of cancer develops from the thyroid’s follicular cells and usually forms a tumour on one lobe of the thyroid. 2. Follicular thyroid cancer is the second most common type of thyroid cancer (about 25% of cases). This type of cancer also develops from the thyroid’s follicular cells. 3. Medullary thyroid cancer makes up about 4% of all thyroid cancers. This type of cancer develops from the C-cells. It can occur sporadically, or it can be linked to an inherited faulty gene. It is possible to inherit familial medullary thyroid cancer (FMTC) or a type of multiple endocrine neoplasia (MEN) syndrome, which puts you at risk for developing endocrine tumours. 4. Anaplastic thyroid cancer is a rare form of thyroid cancer that is most common in elderly people. It represents 1% of all thyroid cancers. This type of cancer, which develops from the follicular cells, may develop from undiagnosed papillary or follicular thyroid cancer. Papillary and follicular thyroid cancers are sometimes called well-differentiated thyroid cancers. This is because the cells resemble healthy thyroid cancer cells. Anaplastic thyroid cancer may be called poorly-differentiated cancer. It is also possible to develop thyroid lymphoma (a type of non-Hodgkin’s lymphoma). The diagnosis and treatment of lymphoma is not discussed in this booklet. For information about lymphoma, call the Cancer Council Helpline on 13 11 20. 8 Cancer Council NSW
  • 11. What are the symptoms? Thyroid cancer usually develops slowly, without many obvious symptoms. Some thyroid cancers are found incidentally when people have their thyroid removed for other reasons. The most common symptom of thyroid cancer is usually a painless lump in the neck or throat. This lump may increase in size or press on the trachea or oesophagus, making it difficult to breathe or swallow. If the lump is on your thyroid, it is called a nodule. You may also experience hoarseness or swollen lymph glands in your neck. In about 90% of cases, a thyroid nodule is a symptom of goitre (a A cancerous thyroid usually continues to benign enlarged thyroid) or another produce hormones, condition affecting the head or neck. so an under- or However, if you notice a lump in your over-active thyroid is neck or have any other symptoms, not typically a you should consult your general symptom of cancer. practitioner (GP) as soon as possible. What is thyroid cancer? 9
  • 12. Causes of thyroid cancer There are several risk factors for developing thyroid cancer, however the presence of one or more risk factors does not necessarily mean you will develop cancer. Most patients do not have an identifiable cause of their cancer. The following factors may increase a person’s risk for developing a type of thyroid cancer: • Exposure to radiation. A small number of thyroid cancer cases are due to having radiotherapy treatment as a child, or living in an area with high levels of radiation in the environment. The latent period from radiation exposure to the development of thyroid cancer is usually about 10 to 20 years. • Family history. Some people inherit one or more faulty genes that predispose them to developing thyroid cancer. If you have a family history of thyroid cancer, you may wish to see a genetic counsellor or family cancer clinic, where you can get information about the most suitable screening for you and your family. Call 13 11 20 to learn more. • Sex. Women are about three times more likely to develop thyroid cancer than men. • Age. Most types of thyroid cancer are diagnosed in people over 40 years old, however some types of cancer are also diagnosed during young adulthood. • Benign thyroid diseases. Having a type of thyroid condition, such as thyroid nodules (adenomas), an enlarged thyroid (goitre) or inflammation of the thyroid (thyroiditis), may increase your chance of developing thyroid cancer. However, having an under- or over-active thyroid (hypothyroidism or hyperthyroidism) does not increase your risk. • Iodine levels. The thyroid uses iodine to make thyroid hormones. Certain foods contain iodine, such as iodised salt, dairy products, seafood and eggs. Some studies have found a link between iodine intake and thyroid cancer, but at the time of publication, this was not yet fully understood. 10 Cancer Council NSW
  • 13. How common is it? According to the Cancer Institute NSW, there were 650 new cases Statistics from the Cancer Institute NSW of thyroid cancer (152 male and show that the five-year 498 female) diagnosed in NSW in survival rate for thyroid 2005. Thyroid cancer accounts for cancer was 94.1% from 0.8% of all male cancers and 3.3% 1999 to 2003. of all female cancers. The median age for males to be diagnosed with thyroid cancer is 50; the age for females is 49. From 1996 to 2005 the incidence rates of thyroid cancer in NSW rose 40% in males and 84% in females. Medical researchers are investigating why incidence rates of thyroid cancer appear to have increased. What is thyroid cancer? 11
  • 14. Diagnosis Your doctor will confirm the diagnosis of thyroid cancer with one or more of the following tests. The tests you undergo depend on your personal circumstances and what is available in your hospital or treatment centre. Blood test Your doctor may take samples of your blood to check the amounts of thyroid hormones (such as T3 and T4) in your bloodstream. Because a cancerous thyroid usually continues to function normally, a blood test may be used to rule out benign thyroid conditions, such as hypothyroidism or hyperthyroidism. A blood test may help diagnose If your blood test medullary thyroid cancer, which may shows evidence of an be indicated by an elevated level of overactive thyroid gland, you may have a calcitonin. It is also commonly used radioisotope scan (see as a follow-up test, to assess if your page 14). treatment was effective (see pages 46 to 47). The blood test may measure thyroid-stimulating hormones (TSH) in your blood. TSH is produced by the pituitary gland, which is also part of the endocrine system. When your body needs more hormones (T3 and T4) from the thyroid gland, the pituitary and hypothalamus glands create TSH, which prompts the thyroid gland to produce and release T3 and T4. 12 Cancer Council NSW
  • 15. Ultrasound An ultrasound is a non-invasive, painless scan that uses soundwaves to build up a picture of part of your body. A gel is spread over the area of your neck where your doctor is scanning to conduct the soundwaves. A paddle-shaped device is moved over the area for a few minutes and a picture will be formed on a computer screen. If you have a lump on your thyroid, the ultrasound can help the doctor determine if it is a solid tumour or fluid-filled cyst. The ultrasound will also check the lymph nodes in your neck for signs of thyroid cancer. The ultrasound is usually performed as an outpatient scan. Biopsy Your doctor may remove some tissue for examination under a microscope. This is called a biopsy. There are two types of biopsy that may be performed if your doctor suspects you have thyroid cancer: 1. Fine needle aspiration: A needle is inserted into the thyroid (or lump in your neck) and a small tissue sample is removed. An ultrasound machine may be used to guide the needle. 2. Surgical biopsy: The doctor administers a local or general anaesthetic, makes a small cut into your neck and removes a piece of thyroid tissue. This type of biopsy is unusual, as it is usually possible to perform a fine needle aspiration. In other cases, your doctor will biopsy tissue during a hemi-thyroidectomy procedure (see page 20). If thyroid cancer is detected, you may require further surgery to remove the rest of your thyroid. Diagnosis 13
  • 16. Radioisotope scan You may have a radioisotope scan as a diagnostic test, usually if your blood test shows evidence of an overactive thyroid (hyperthyroidism). A radioisotope scan is also commonly used as a follow-up test, to check if there are any cancer cells remaining in your body after treatment (see pages 46 to 47). In this test, a small amount of radioactive liquid (such as iodine or technetium) is injected into a vein in your arm. The liquid will circulate your body for about 20 minutes, and then you will be asked to lie on a couch under a machine called a gamma camera. The gamma camera will identify how A radioisotope scan is much radioactive liquid is absorbed not used to diagnose by cells. Cells that don’t take up much or stage medullary radioactive fluid are called “cold” thyroid cancer, because C-cells do nodules, and cells that take up the not absorb iodine. fluid may be called hyperfunctioning or “hot” nodules. The presence of a cold nodule may indicate that you have a benign thyroid condition. Only about 10% of cold nodules are cancerous. Hot nodules can also indicate a benign condition (such as hyperthyroidism). It is extremely rare for a hot nodule to be cancerous. In some cases your specialist will perform a biopsy on your thyroid nodule. This will determine if it is cancerous. See the previous section for information about biopsy. A radioisotope scan has no major side effects, and the scan itself is painless. Levels of radioactivity after this scan are very low, so it is safe for you to interact with others soon after the scan. 14 Cancer Council NSW
  • 17. Further scans The following tests are usually used to determine the extent of the cancer (how far it has spread or metastasised). The scans may also be used after a surgical procedure, such as a thyroidectomy (see page 20). CT scan A computerised tomography (CT) scan is a procedure that uses x-ray beams to take pictures of the inside of your body. Unlike a standard x-ray, which takes a single picture, a CT scan uses a computer to compile many pictures of areas of your body. You may have a CT scan if your thyroid is enlarged, so your doctor can make sure your trachea (windpipe) is not too compressed. It is unlikely that you will have a CT scan as a diagnostic test for papillary or follicular thyroid cancer. This is because the iodine in the CT scan dye may interfere with future cancer treatments. Diagnosis 15
  • 18. You may have an injection of a special dye into your veins before the scan. This dye will help make the scan pictures clearer. It may make you feel flushed or hot for a few minutes. Rarely, more serious reactions occur, such as breathing difficulties or low blood pressure. You will be asked to lie still on a table while the CT scanner, which is large and round like a doughnut, slowly moves around you. This is painless and though the scan itself takes only a few minutes, preparation The special dye that is time will take about 10 to 30 used for a CT or MRI scan minutes. You will be able to go is called a contrast home when the scan is complete. solution and may contain iodine. If you are allergic to iodine, fish or dyes, let MRI scan the person performing the scan know in advance. A magnetic resonance imaging (MRI) scan uses a combination of magnetism and radio waves to build up detailed cross-section pictures of the body. This test involves lying on a couch in 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. Some people feel anxious lying in the narrow metal cylinder when they are having an MRI. Talk to your health care team before the scan if you are claustrophobic. It may be helpful to take a mild sedative or talk to the person operating the scan through an intercom. Though the MRI scanner can feel tightly enclosed and noisy, the test is painless and is usually complete in about one hour. You will be able to go home when the scan is complete. People who have a pacemaker or other metallic object in their body cannot have an MRI due to the effect of the magnet. 16 Cancer Council NSW
  • 19. PET scan A positron emission tomography (PET) scan is a specialised imaging test, which is available at some hospitals. A PET scan may be used to assess if cancer has spread (metastasised), or it may be used after a thyroidectomy (see page 20) to determine if the cancer has come back. In this test, you are given a radioactive glucose solution. Active cancer cells will have an increased uptake of this solution. It takes 30 to 90 minutes for the glucose solution to go through your If you are diabetic, you will have to body, and during this time you will be follow a special sedated or be asked to sit quietly. It is protocol for your PET important not to talk, eat or move, as scan. Tell the hospital this may result in false test results. staff when booking Your body will then be scanned for your PET scan. high levels of radioactive glucose. The test is usually done on an outpatient basis, however it takes several hours to prepare for and undergo the scan. Diagnosis 17
  • 20. Staging thyroid cancer If the results of diagnostic tests detect thyroid cancer, your doctor will assign a stage to describe its size and how far it has spread. Staging the cancer helps your health care team decide what treatment is best for you. Most cancers follow a general, international staging system called TNM, however some types of thyroid cancer are staged according to a numeric system. The system ranges from stage 1 (small, localised cancer) to stage 4 (cancer that has spread to remote parts of the body). The way thyroid cancer is staged depends on several factors, such as the type of thyroid cancer, your age and your general health. Doctors will usually explain cancer staging in plain English. If you are confused about thyroid cancer staging, ask your doctor or nurse to give you more information. You can also call the Cancer Council Helpline on 13 11 20 for more information. Prognosis Prognosis means the expected outcome of a disease. The common types of thyroid cancer (such as papillary and follicular cancer) have a very good long term prognosis, especially if the cancer is confined to the thyroid and has not spread (metastasised). You will need to discuss your prognosis with your doctor, but it is not possible for any doctor to give you a 100% accurate prediction on the course of the illness. The type of thyroid cancer, test results, the rate and depth of tumour growth, how well you respond to treatment, and other factors such as age, fitness and your medical history are all important factors in assessing your prognosis. 18 Cancer Council NSW
  • 21. 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 specialist who will arrange further tests and advise you about treatment options. You will be cared for by a range of health professionals who specialise in different aspects of your treatment. These may include: • clinical nurse consultant: supports you throughout treatment and answers your questions • dietitian: supports and educates patients about optimal nutrition and diet during treatment and recovery • endocrinologist: specialises in diagnosing and treating disorders of the endocrine system • endocrine surgeon: operates on the thyroid gland, parathyroid glands, adrenal glands and the endocrine pancreas • ENT surgeon: specialises in treating the ears, nose and throat, and checks your vocal cords before and after surgery • head and neck surgeon: operates on cancer in the head and neck region • medical oncologist: plans and administers chemotherapy • nuclear medicine specialist: coordinates the delivery of radioactive iodine treatment and nuclear scans • psychologists and counsellors: help you manage your feelings and cope with changes to your life as a result of cancer or its treatments • radiation oncologist: plans and administers radiotherapy • social worker: helps provide emotional support and practical assistance to patients and carers • speech pathologist: rehabilitates patients with communication and swallowing disorders. Diagnosis 19
  • 22. Treatment and side effects The type of cancer treatment you have will depend on the type of thyroid cancer you have, its stage, the recommendations of your doctors and what you want. Surgery Most patients have surgery to treat thyroid cancer. The type of operation you have and whether or not you receive additional treatment will depend on your personal circumstances. There are two main types of thyroid surgery: 1. Partial or hemi-thyroidectomy: In this operation, only the affected lobe or section of the thyroid is removed. This procedure is often performed as a diagnostic measure (biopsy) to determine if you have thyroid cancer. 2. Total thyroidectomy: The whole thyroid gland, including the isthmus, is removed. You will probably have this type of surgery if you have already been diagnosed with thyroid cancer. Surgeons often advise patients to have a total thyroidectomy because undetected cancer cells may exist in other parts of the thyroid gland, and if the entire gland is removed, this reduces the likelihood that further surgery will be required. After a total thyroidectomy, you may have radioactive iodine treatment to remove any cancer cells that have spread throughout the body. This is called thyroid ablation. To learn more about this treatment, see page 26. 20 Cancer Council NSW
  • 23. With either type of operation, it may be necessary for the surgeon to remove tissues, such as lymph nodes, from the area around your thyroid gland. This procedure is called a neck dissection. Neck dissections are performed as a preventative measure, or if the lymph nodes are enlarged due to the cancer spreading (metastasising). In very rare cases, the surgeon must remove other tissue near the thyroid. In the vast majority of cases, however, only the thyroid is removed (standard thyroidectomy). If you are concerned about the surgery, talk to your doctor. Side effects You will probably stay in hospital for a few days to recover from your operation. During this time, you may feel some pain or discomfort in your neck. If you feel uncomfortable, ask your doctors to prescribe some pain-relieving medication. Don’t wait until the pain becomes severe. You will have an intravenous drip to replace your body’s fluids until you are able to eat and drink again. Most patients are able to eat or drink after about 12 to 24 hours, and this drip is removed. You may also have some other tubes draining fluid from your wound, which will be sealed with stitches or small clips. The drips, stitches and clips will dissolve or be removed in a few days. Treatment and side effects 21
  • 24. Thyroid hormone replacement therapy For many people, the most significant long-term impact of thyroid surgery is the fact that it is necessary to take a thyroid hormone replacement for the rest of their life. If your thyroid is removed, you will no longer produce the hormones that maintain your metabolism and keep your body functioning at a normal, healthy rate. You must replace thyroxine (T4) by taking an oral hormone tablet everyday. If you do not take this hormone medication, you will develop the symptoms of hypothyroidism, which can include weight gain, constipation, brittle and dry hair and skin, sluggishness and fatigue. Some people who have a partial or In addition to supplying your body hemi-thyroidectomy with the missing T4 hormone that will also be your thyroid would normally produce, prescribed T4. This usually suppresses the hormone tablet will suppress your TSH production to pituitary gland’s production of prevent cancer cells thyroid-stimulating hormone (TSH). from reappearing. High levels of TSH may cause cancer cells to grow. Some people receive radioactive iodine treatment (see page 26) about six weeks after surgery. During the gap between surgery and further treatment, you may not take hormone replacement medication. Tell your doctor if you are feeling very unwell, as your treatment schedule may be adjusted. 22 Cancer Council NSW
  • 25. You will have blood tests every few months until your doctor determines the appropriate T4 dosage for you. Finding the correct dosage may take weeks or months, and it will be adjusted throughout your life (for example, if you fall pregnant, your dosage would probably have to be adjusted due to hormonal changes). You will have regular blood tests and checkups with your doctor. Until you are taking the right dose of T4, you may feel unwell and experience the symptoms of hypothyroidism or hyperthyroidism. Once you have the correct amount of hormones in your body, however, you should not experience side effects from taking the hormones. Some people feel distressed or upset about taking medication everyday for the rest of their life. Talking to someone about how you feel may also help you. See pages 48 to 55 for information about support services. It took my doctor a few months to adjust my T4 medication to the correct level. Once I had been on the correct dosage for a while, I felt like myself again. Treatment and side effects 23
  • 26. Taking care of yourself after thyroid surgery Most people who have thyroid surgery are able to eat and drink normally after they recover. However, some people find it painful to swallow for a few days after having surgery. If necessary, your health care team will assess how you swallow and make changes Eating and to your diet (such as soft, moist foods). drinking It is important your body is nourished so it can recover from surgery, so try to continue gently swallowing and eating as much as possible, as recommended by your speech pathologist and dietitian. Your dietitian may recommend nutritional supplements (such as Ensure or Sustagen). You will have a scar across your neck above your collarbone. Though it will initially appear red, it will fade and become less noticeable Cosmetic in time. Massage or creams may minimise appearance the appearance of the scar. See Changing body image on page 42 for more information. The position you are placed in for surgery can sometimes give you a stiff neck. This is Neck only temporary, and neck massage and discomfort physiotherapy may help loosen the muscles in your neck. 24 Cancer Council NSW
  • 27. Sometimes thyroid surgery affects the nerves that lead to the larynx (voice box). This can make your voice sound hoarse or Speaking weak after the operation. For the majority of patients, this is a temporary condition. Your surgeon may test your vocal cords before and after surgery. Most people who have thyroid surgery can resume normal activities shortly after their Rest operation, however some people need more time to recover. After surgery, your doctor will do blood tests to check whether your parathyroid glands (located behind your thyroid gland) were damaged during surgery. After a total thyroidectomy, it is common for these glands to cease functioning temporarily. Calcium If the parathyroid glands are not functioning supplements properly, your blood calcium levels may drop. Your doctor will do a blood test, and may prescribe calcium and/or vitamin D supplements for a short period of time (until the parathyroids recover). Occasionally, it is necessary to continue taking calcium supplements long term. Most people who have thyroid surgery do not have any breathing difficulty after the Breathing operation. If you have difficulty breathing, tell your nurse or doctor immediately. Treatment and side effects 25
  • 28. Radioactive iodine treatment Doctors use radioactive iodine as a type of internal radiotherapy treatment. You will be given a radioactive iodine substance, usually in tablet form. You may also be given a man-made recombinant human thyroid-stimulating hormone (rhTSH) to help your cells take up the radioactive iodine substance. When you ingest it, the radioactive substance targets thyroid cancer cells effectively because thyroid cells absorb iodine more than other cells in the body. When it is absorbed, the radiation destroys the cells. The two types of radioactive iodine treatment are: • Radioactive iodine ablation (thyroid ablation): radioactive iodine administered after a thyroid operation. The radioactive iodine will destroy any normal or cancerous tissue that remains after surgery. • Radioactive iodine therapy: treatment that is intended to destroy thyroid cancer cells in the body after the first ablation. This therapy is given if tests show that cancer cells are still in your body. You will need a sufficient amount of TSH in your body for your treatment to be successful. This means that before treatment, you will either have to stop taking any thyroid hormone replacements for two to four weeks or take a man-made recombinant human thyroid-stimulating hormone (rhTSH). See pages 46 to 47. If you are pregnant, you You will also have to start cannot have radioactive eating a low or no iodine diet iodine treatment. You can before treatment. Your health have treatment if you are care team will give you advice breastfeeding, but you will have to stop feeding during about which foods to avoid, and after treatment. Talk to including seafood, iodised table your doctor to learn more. salt, some dairy products, and foods with certain colourings. 26 Cancer Council NSW
  • 29. Side effects Radioactive iodine treatment will make you slightly radioactive for about five days, and you will have to stay in hospital for all or part of this time. Your medical team, family members and friends will have to take precautions to avoid being exposed to radiation. The safety measures vary for each hospital, however they usually include: • keeping you in an isolated, lead-lined room • restricting visitors – particularly children and pregnant women – from entering your room • asking any visitors in your room to stand a certain distance away from your bedside and remain in the room for only a short period of time • using an instrument called a Geiger Counter to measure your radiation level • taking extra precautions when dealing with your body fluids (such as urine, sweat, saliva and blood) and food and drink leftovers. These safety measures may make you feel frightened, lonely and depressed. Talk to the doctors, nurses or a counsellor if you feel this way. They will provide support, explain the treatment or help your family support you. Usually, being temporarily radioactive is the only major side effect of radioactive iodine treatment. If you experience side effects, they are often associated with thyroid hormone withdrawal. Some people feel tired, nauseous, breathless, or have an altered sense of taste for about 24 hours after treatment. Tell your doctors if you feel this way. They may suggest you flush out your system with fluids or chew lollies or gum to prevent damage to your salivary glands. They can also prescribe medication, if necessary. Treatment and side effects 27
  • 30. After radioactive iodine treatment, you may have a full body radioisotope scan (see page 14). This scan will show if any healthy thyroid cells remain, and may indicate if the cancer has spread to your lymph glands (or other areas of your body, such as your lungs or bones). You may have to implement continued safety measures when you are discharged from hospital. For example, you may have to sleep alone or wash your clothing separately for a certain period of time. If these precautions are necessary, your medical team will discuss it with you before treatment. If you receive radioactive iodine treatment, your doctors will advise you not to conceive a child for about one year. You and your partner may wish to talk about fertility issues with your doctor. Your doctor can discuss how treatment will affect you and what options are available if you want to have children in the future. 28 Cancer Council NSW
  • 31. External radiotherapy External radiotherapy is the use of high-energy x-rays or electron beams to kill or damage cancer cells. It is most commonly used to treat medullary or anaplastic thyroid cancer, because radioactive iodine treatment is usually less effective for these types of cancer. Radiotherapy may be given after surgery, instead of surgery, or as a treatment for advanced cancer. Before your treatments begin, your doctors will schedule a planning (simulation) session. During this session, your doctor will take x-rays to determine the precise area to be treated. The doctor will either make small marks or tattoos on your skin or fit you for a special mask to wear during treatment. This ensures the same part of your body is targeted during each treatment session. If you have a mask, it will immobilise you so that the radiation beams If you receive always treat the correct areas of radiotherapy, you will usually have your neck. You will be able to see an outpatient and breathe through the mask, and treatment session you will only have to wear it for once a day, Monday about 10 minutes at a time during to Friday, for about treatment. Let your doctor know if five to seven weeks. you are claustrophobic. Treatment and side effects 29
  • 32. Side effects The side effects of external radiotherapy treatment vary. Most side effects are temporary and disappear within a few weeks or months after treatment. Your doctor and nurses can talk to you about ways to reduce or manage side effects you may experience. You may experience the following side effects: • Feeling tired and lacking energy. This is the most common side effect of radiotherapy. Try to plan activities and appointments so you can rest regularly throughout the day. You can also talk to your family and friends about ways they can help you. • Temporary difficulty swallowing (dysphagia) or pain on swallowing (odynophagia). This may occur during and immediately following radiotherapy treatment. A dietitian can help you modify the texture of your diet to minimise discomfort, and your doctor can prescribe pain-killers or special mouthwashes. If necessary, a speech pathologist can also advise you about safe food and fluid textures. • Temporarily red, dry, itchy, sore or ulcerated skin. In some cases, you can use non-perfumed, water-based lotions or creams to soothe the area, but you You will not be should consult with your radiation radioactive after oncologist before using any products. external radiotherapy treatment, so it is safe For more information about the side to leave hospital and effects of radiotherapy, call 13 11 20 interact with others. for free copies of Understanding Radiotherapy and Food and Cancer. 30 Cancer Council NSW
  • 33. 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. Chemotherapy is only very occasionally used in the management of thyroid cancer. Though it is not a common treatment for thyroid cancer, chemotherapy may be given for advanced cancer that has spread (metastasised) to other parts of the body. Chemotherapy is usually given by injection into a vein (intravenously). You will probably have several sessions of chemotherapy over a few weeks, however your medical team will determine your treatment schedule. 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 13 11 20 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 (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. Treatment and side effects 31
  • 34. Palliative treatment Palliative treatment helps improve people’s 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, Palliative chemotherapy or other medication. treatment can For more information on palliative help with pain treatment or advanced cancer, call the management – it is not just for Helpline for free copies of people who are Understanding Palliative Care or Living about to die. with Advanced Cancer, or view them online at www.cancercouncil.com.au. 32 Cancer Council NSW
  • 35. Making treatment decisions Sometimes it is difficult to decide on the right treatment. You may feel that everything is happening so fast that you don’t have time to think things through, 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 You always have the right to find out what advantages and disadvantages of each a suggested treatment. If only one type of treatment means for treatment is recommended, ask your you, and the right to doctor to explain why other choices accept or refuse it. have not been offered. 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 not to have treatment, but instead optimise their physical and emotional well-being by managing their symptoms. Making treatment decisions 33
  • 36. 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 side effects with them. 4. If only one type of treatment is recommended, ask your doctor if other treatment choices are available. 5. Find out more about the treatment choices offered to you – speak to your doctor, consider getting a second opinion, look at the recommended Internet sites on pages 52 to 53, 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. 34 Cancer Council NSW
  • 37. 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 56. 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 13 11 20. Talking it over can help sort out the right course of action for you. Making treatment decisions 35
  • 38. 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 decision- making process. It can confirm or clarify your doctor’s recommended treatment plan and reassure you that you have explored all of your options. A second specialist can also answer any questions you may still have. Your original specialist or family doctor can refer you to another specialist and you can ask for your initial results to be sent to the second-opinion doctor. You may later decide you would prefer to be treated by the doctor who provided the second opinion, and 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. Getting a second opinion about my thyroid cancer treatment made me feel confident I was doing what was right for me. 36 Cancer Council NSW
  • 39. 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 in a trial gives you important rights. You have the right to withdraw at any time. Doing so will not jeopardise your treatment for cancer. For more information about clinical trials – and how to find a trial that may be suitable for you – call the Helpline for a free copy of Understanding Clinical Trials. Making treatment decisions 37
  • 40. 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. 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. 38 Cancer Council NSW
  • 41. Being active You will probably find it helpful to stay active and to exercise regularly if you can. Physical activity – even if gentle or for a short duration – helps to improve circulation, reduce tiredness, decrease joint or muscle pain, and elevate mood. The amount and type of exercise you do will depend on what you are used to, 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. Relaxation techniques Some people find relaxation or meditation helps them feel better by releasing tension and anxiety. Often, relaxation exercises can also help reduce pain and increase energy levels. The hospital social worker or nurse will know whether the hospital or a community health centre runs any programs. You may also enjoy exploring relaxation techniques in the comfort of your own home using audiovisual material such as CDs or DVDs. Contact your local library or the Cancer Council Helpline to access these resources. Looking after yourself 39
  • 42. 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 Cancer Council Helpline for a free Understanding Complementary Therapies booklet. 40 Cancer Council NSW
  • 43. 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 The Cancer Council’s adjusting to changes in their own publication, Emotions way. If someone’s behaviour upsets and Cancer, may be you, it will probably help to have a helpful to you. Call discussion about how you both feel 13 11 20 for a free copy. about the situation. Looking after yourself 41
  • 44. Changing body image Cancer treatment can change the way you feel about yourself (your self-esteem). You may feel less confident about who you are and what you can do. This is more common if your body has changed physically, but even if it has not, you may still be affected by lowered self-esteem. Give yourself time to adapt to these changes and try not to focus solely on the parts of you that have changed. Seeing yourself as a whole person (your body, mind and personality) can help to increase Look Good…Feel Better is a program that your self-esteem. You may eventually helps people restore adjust to and come to accept any their self-esteem by physical changes. managing appearance- related side effects. For practical suggestions about Call 1800 650 960 or weight changes and other physical visit www.lgfb.org.au. changes, call the Cancer Council Helpline on 13 11 20. 42 Cancer Council NSW
  • 45. Sexuality, intimacy and cancer The role that sexuality and intimacy play in people’s lives is ever changing and depends on one’s age, environment, health, relationships, culture, beliefs and interest. As individuals, people not only have different ways of expressing and defining sexuality and intimacy, but they also place their own importance on these needs. Having cancer can affect your sexuality in both physical and emotional ways. The impact of these changes depends on many factors, such as your treatment and its side effects, the way you and your partner communicate, and your self-confidence. Knowing the potential challenges, such as a change in libido, and addressing them if they affect you personally will help you overcome or adjust to these changes. Sexual intercourse may not always be possible, but closeness and communication are vital to a healthy relationship. More information about sexuality for men and women is available. Call 13 11 20 for a copy of the Cancer Council’s sexuality booklets. Looking after yourself 43
  • 46. 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 recover from the If you need help physical and emotional changes you around the house, have experienced. You may not be fit ask your friends and enough to do your usual activities family or request a referral to a hospital around the house. If you are returning social worker. to work, you should ease back into it slowly, if possible. After treatment, it is common to feel anxious rather than more secure. Beforehand, you were busy with appointments and focused on treatment, but now you may feel you are facing 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 were to return, might reassure you. Many people report that after cancer they have a new perspective on life and they see things with a new clarity. Your priorities may change. For example, you may decide to spend more time with family, start a new hobby, travel or get involved in advocacy or volunteer work. 44 Cancer Council NSW
  • 47. 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. Part of managing thyroid cancer is having regular follow-up appointments with your doctor, and it may take some time to balance these checkups with resuming day-to-day activities and making plans for the future. Talking to someone who has had thyroid cancer may help you deal with the uncertainties or challenges you encounter. For more information see page 50. 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 clinically depressed. Counselling and prescribed medication may help you. Looking after yourself 45
  • 48. Follow-up appointments Thyroid cancer can recur several years after initial diagnosis, so it is important to monitor your health and have regular checkups with your doctor. During your follow-up appointments, your doctor may perform an ultrasound, blood test, or radioisotope scan to check for cancer cells. These tests are described in the Diagnosis chapter (pages 12 to 19). You will not receive accurate blood test or radioisotope scan results if you are taking any thyroid hormone replacements. This is because you need to have a certain level of thyroid- stimulating hormone (TSH) in your body for cancer detection tests, but TSH is suppressed when you are having thyroxine (T4) replacement therapy. Your doctor will advise you to do one of two things before your appointment. You will either: 1. Stop taking the hormone replacements for a certain time period (about two to six weeks) before your appointment. This will cause your body to produce thyroid-stimulating hormone (TSH). However, your thyroid hormone levels will decrease if you are not taking hormone replacements, and you will experience the symptoms of hypothyroidism. 2. Continue with your normal thyroid hormone replacement therapy, and take a recombinant human thyroid-stimulating hormone (rhTSH). rhTSH is a man-made drug that imitates TSH and ensures that there is enough TSH in your body for rhTSH can also accurate test results. It is given as be used in the treatment of two injections, 24 hours apart. You thyroid cancer. will be able to have your radioactive See page 26 for iodine scan and/or blood test about more information. 48 to 72 hours after your second rhTSH injection. 46 Cancer Council NSW
  • 49. It is increasingly common for people to receive rhTSH so they can continue hormone replacement treatment. rhTSH has few side effects (some people experience headaches, nausea or weakness), but these side effects are temporary. If you are receiving rhTSH injections, talk to your doctor about side effects you may experience. If you have papillary or follicular thyroid cancer, you will probably have a follow-up blood test. The blood test will detect a protein called thyroglobulin. Thyroglobulin is normally produced by a healthy thyroid gland, but it may also be made by some thyroid cancer cells. If thyroglobulin is detected in your blood, your doctor may perform some additional scans (see pages 12 to 17). A radioisotope scan may detect thyroid cancer cells remaining in your body. For more information, see page 14. If scan results are inconclusive, or if there are cancer cells elsewhere in your body, you may have a CT or PET scan. See pages 15 and 17, respectively. I had rhTSH injections for a recent follow-up. I didn’t experience any side effects, and I was able to continue taking my daily T4 hormone replacement. Looking after yourself 47
  • 50. Seeking support When you are first diagnosed with cancer, it is normal to experience a range of emotions, such as fear, sadness, depression, anger or frustration. If anxiety or depression is ongoing or severe, tell your doctor about it as counselling or medication can help. It may help to talk about your feelings with others. Your partner, family members and friends are a good source of support or you might prefer to talk to: • members of your treatment team • a hospital counsellor, social worker or psychologist • your religious or spiritual adviser • a support group – see page 50 • the Cancer Council Helpline. If you have children, the prospect of telling them you have cancer can be frightening and unsettling. The Cancer Council booklet When a Parent Has Cancer: how to talk to your kids can help you prepare for this difficult conversation. You may find that your friends and family don’t know what to say to you. In time, you may feel able to approach your friends directly and tell them what you need. Some people prefer to ask a family member or a friend to talk with others and coordinate any offers of help. Some people may feel so uncomfortable that they avoid you. They may expect you to ‘lead the way’ and tell them what you need. This can be difficult to handle and can make you feel lonely and upset. The Cancer Council’s booklet Emotions and Cancer may help at this stressful time. Call 13 11 20 for a copy or download it from the Cancer Council’s website, www.cancercouncil.com.au. 48 Cancer Council NSW
  • 51. Practical and financial help A serious illness often causes practical and financial difficulties. You don’t need to face these alone. Many services are available to help: • Financial assistance, through benefits and pensions, can help pay for the cost of prescription medicines and for travel to medical appointments. • Home nursing care is available through community nursing services or through the local palliative care services. • Meals on Wheels, home care services, aids and appliances can make life easier. To find out more, contact the hospital social worker, occupational therapist or physiotherapist, or the Cancer Council Helpline. Understanding Cancer program If you want to find out more about cancer and how to cope with it, you may find the Cancer Council’s Understanding Cancer program helpful. The program offers practical information and discussions about many of the issues people experience after a diagnosis of cancer. Topics covered include: what cancer is, cancer symptoms and side effects, treatment, palliative care, diet, exercise and complementary therapies. Courses are held frequently at hospitals and community organisations throughout NSW. Call the Helpline to find out more. Seeking support 49
  • 52. Talk to someone who’s been there Getting in touch with other people who have been through a similar experience to you can be very beneficial. There are many ways you can get in contact with others for mutual support and to share information. In these support settings, most people feel they can speak openly, share tips with others, and just be themselves. You will probably find that you feel comfortable talking about your diagnosis and treatment, your relationships with friends and family, and your hopes and fears about the future. Support services are available for patients, carers and family members. They may include: • face-to-face support groups, which are often held in community centres or hospitals • tumour- or situation-specific telephone support groups, which are facilitated by trained counsellors • online discussion forums where people can connect with each other any time • Cancer Council Connect, a program that matches you with a volunteer who has been through a similar cancer experience, and who understands how you’re feeling. Ask your nurse or social worker to tell you about support groups in your area. You can also visit the Cancer Council website, www.cancercouncil.com.au, to access the Cancer Services Directory or join the online discussion. 50 Cancer Council NSW
  • 53. Cancer Council Helpline 13 11 20 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 (www.relayservice.com.au). This service will help you to communicate with a Cancer Council Helpline consultant. Seeking support 51
  • 54. 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 1800 242 636 to talk about your needs, or visit www.carersnsw.asn.au. 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. 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 .................................. www.cancercouncil.com.au Cancer Council Australia ................................................ www.cancer.org.au Cancer Institute NSW ................................. www.cancerinstitute.org.au 52 Cancer Council NSW
  • 55. Health Insite – an Australian Government initiative ......................................... www.healthinsite.gov.au Commonwealth Department of Health and Ageing ........................................................... www.health.gov.au NSW Health ...................................................................... www.health.nsw.gov.au Australian Endocrine Surgeons .......................................................... www.endocrinesurgeons.org.au Australian Thyroid Foundation ................................................. www.thyroidfoundation.com.au Thyroid Australia ................................................................. www.thyroid.org.au International American Cancer Society ........................................................ www.cancer.org Macmillan Cancerbackup ........................ www.cancerbackup.org.uk US National Cancer Institute ............................................. www.cancer.gov ThyCa: Thyroid Cancer Survivors’ Association .................................................................... www.thyca.org British Thyroid Association ...................................... www.british-thyroid-association.org Seeking support 53
  • 56. Cancer information library Following a cancer diagnosis, many people would like to access information about new types of treatment, the latest research findings, and stories about how other people have coped. The Cancer Council 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 Cancer Council librarian on 13 11 20 or email library@nswcc.org.au. 54 Cancer Council NSW
  • 57. Related publications You might also find the following publications relevant: • Emotions and Cancer • Understanding Chemotherapy • Understanding Radiotherapy • Sexuality for Men with Cancer • Sexuality for Women with Cancer • Understanding Palliative Care • Understanding Clinical Trials • When a Parent Has Cancer: how to talk to your kids • Caring for Someone with Cancer • Food and Cancer • After Your Cancer Treatment: a guide to eating well and being active. Call the Helpline for free copies of any of these Cancer Council booklets, or download them from our website, www.cancercouncil.com.au/cancerinformation. Seeking support 55
  • 58. Question checklist You may find this checklist helpful when thinking about the questions you want to ask your doctor about your illness and treatment. If your doctor gives you answers that you don’t understand, it is okay to ask for clarification. 1 What type of thyroid cancer do I have? 2 How extensive is my cancer? 3 What treatment do you recommend and why? 4 Are the latest tests and treatments for my type of cancer available in this hospital? 5 Are there other treatment choices for me? If not, why not? 6 What are the risks and possible side effects of each treatment? 7 Will I have to stay in hospital? 8 How long will treatment take? How much will it affect what I can do? 9 How much will treatment cost? 10 Will I have a lot of pain with the treatment? What will be done about this? 11 Will the treatment affect my sex life? 12 Are there any clinical trials of new treatments? 13 How frequently will I have checkups? 14 Are there any complementary therapies that might help me? 56 Cancer Council NSW
  • 59. Glossary ablation See radioactive iodine ablation. Adam’s apple The laryngeal prominence. This is the protrusion in the neck caused by cartilage around the thyroid and larynx. The Adam’s apple is usually more noticeable in men. adenoma A benign thyroid nodule. Having an adenoma may increase your chance of developing thyroid cancer. anaemia A condition that occurs when you don’t have enough red blood cells or haemoglobin, an oxygen-carrying protein, in your body. anaesthetic A drug that is taken to stop a person feeling pain during a medical procedure. A local anaesthetic numbs part of the body; a general anaesthetic causes temporary loss of consciousness. anaplastic thyroid cancer The rarest type of thyroid cancer, developing from the follicular cells. benign Not cancerous. Benign lumps do not spread like cancerous tumours. biopsy The removal of a small sample of tissue from the body, for examination under a microscope, to help diagnose a disease. calcitonin A hormone produced by the thyroid gland which controls calcium levels in the blood. Glossary 57
  • 60. cells The building blocks of the body. A human is made of millions of cells, which are adapted for different functions. chemotherapy The use of cytotoxic drugs to treat cancer by killing cancer cells or slowing their growth. CT scan A computerised tomography scan. This is a procedure that uses x-ray beams to build a picture of the inside of your body. dysphagia Difficulty swallowing. endocrine system The system of the body that is responsible for producing hormones. endocrinologist A doctor who specialises in treating people with disorders of the endocrine system. familial adenomatous polyposis A genetic condition that leads to the formation of polyps in the intestinal tract. This may be a risk factor for thyroid cancer. familial medullary cancer A hereditary type of medullary thyroid cancer. follicular cells One of the two main types of cells that make up the thyroid gland. They create a protein and produce and store T3 and T4. follicular thyroid cancer The second most common type of thyroid cancer, developing from the follicular cells. 58 Cancer Council NSW
  • 61. Geiger counter An instrument used to measure radiation levels. goitre A benign enlarged thyroid. hemi-thyroidectomy Also called a partial thyroidectomy. The surgical removal of part of the thyroid gland. hormones Chemical messages in the body that transfer information between cells. hyperthyroidism A benign condition that occurs when the thyroid is overactive and produces too many hormones. hypothalamus gland An endocrine gland that produces a type of thyroid-stimulating hormone. hypothyroidism A benign condition that occurs when the thyroid does not produce enough hormones. intravenous Inserted into a vein. iodine An essential element that allows the thyroid gland to produce hormones. Iodine can be found in foods such as seafood, some dairy products, eggs and iodised salts. isthmus The band of tissue that connects the two lobes of the thyroid. Glossary 59
  • 62. larynx The voice box, which houses the vocal cords. lymph nodes Also called lymph glands. Small, rounded masses that make up the body’s lymphatic system. The lymph nodes collect and destroy bacteria and viruses. lymphatic system A network of tissues, capillaries, vessels, ducts and nodes that removes excess fluid from tissues, absorbs fatty acids and transports fat, and produces immune cells. malignant Cancer. Malignant cells can spread (metastasise) and eventually cause death if they cannot be treated. medullary thyroid cancer A type of thyroid cancer arising from the C-cells. metabolism The chemical process that is necessary for a living being to stay alive. It causes cells to grow, reproduce, respond to their environment and remain alive. metastasis Also known as a secondary cancer. A cancer that has spread from another part of the body. MRI scan A magnetic resonance imaging scan. This uses a combination of magnetism and radio waves to build up detailed cross-section pictures of the body. multiple endocrine neoplasia (MEN) A benign condition that increases a person’s risk of developing endocrine tumours. 60 Cancer Council NSW
  • 63. neck dissection An operation that removes lymph nodes and some surrounding structures in the neck (such as muscle, fat or nerves). nodule A lump on the thyroid. oesophagus The tube that carries food from the throat into the stomach. palliative treatment Medical treatment for people with advanced cancer to help them manage pain and other physical and emotional symptoms of cancer. papillary thyroid cancer The most common type of thyroid cancer, developing from the follicular cells. parafollicular cells (C-cells) One of the two main types of cells that make up the thyroid gland. They produce calcitonin. parathyroid glands Four glands that sit behind the thyroid gland and produce hormones to maintain the body’s calcium and phosphorus balance. PET scan A positron emission tomography scan. This is a specialised imaging test that uses a radioactive glucose solution to identify cancer cells in the body. pituitary gland An endocrine gland that produces a type of TSH. prognosis The likely outcome of a person’s disease. Glossary 61
  • 64. radioactive iodine ablation Also called thyroid ablation. Receiving radioactive iodine after a thyroid operation in order to destroy any normal or cancerous tissue left behind by surgery. radioactive iodine therapy Treatment that is intended to destroy thyroid cancer cells in the body. radioactive iodine treatment The use of radioactive iodine ablation (thyroid ablation) or radioactive iodine therapy to treat thyroid cancer. radiotherapy The use of high-energy x-rays or electrons to kill cancer cells or injure them so they cannot grow and multiply. Radiotherapy may be administered externally or internally (as radioactive iodine ablation or therapy). sporadic cancer Cancer occurring in an individual without a family history of cancer. staging Tests to find out how far the cancer has spread. thyroglobulin A protein normally produced by the thyroid gland. thyroid A butterfly-shaped endocrine gland located at the base of the neck. The thyroid releases hormones to control the body’s metabolism and calcium levels. thyroidectomy The surgical removal of the thyroid gland. Also called a total thyroidectomy. thyroiditis Benign inflammation of the thyroid. 62 Cancer Council NSW
  • 65. thyroid lymphoma A type of non-Hodgkin’s lymphoma affecting the thyroid gland. thyroid-stimulating hormone (TSH) A hormone that prompts the thyroid gland to produce and release T3 and T4. The pituitary and hypothalamus glands are responsible for TSH production. thyroxine (T4) A hormone produced by the thyroid gland which regulates the body’s metabolism. T4 can be converted into a hormone called tri-idothyronine (T3). trachea The windpipe. The trachea is the airway that brings air inhaled from the nose and mouth into the lungs. tracheostomy An operation in which a hole is made at the base of the neck into the trachea, and through which a tube is passed, in order to create a clear airway. The hole is called a tracheostomy, but it is sometimes referred to as a tracheostoma. tri-idothyronine (T3) A hormone produced by the thyroid gland which regulates the body’s metabolism. tumour A new or abnormal growth of tissue in or on the body. A tumour may be benign or malignant. ultrasound scan The use of soundwaves to build up a picture of part of the body. Glossary 63
  • 66. How you can help At the Cancer Council NSW we’re dedicated to defeating cancer. As well as funding more cancer research than any other charity in the state, we advocate for the highest quality of care for cancer patients and their families, and create cancer-smart communities by empowering people with knowledge about cancer, its prevention and early detection. We also offer direct financial assistance for those people in hardship as a result of having cancer. These achievements would not be possible without community support, great and small. Join a Cancer Council event: join one of our community fundraising events like Daffodil Day, Australia’s Biggest Morning Tea, Relay For Life, Girls Night In and Pink Ribbon Day, or hold your own fundraiser or become a volunteer. Make a donation: any donation whether large or small will make a meaningful contribution to our fight to defeat cancer. Buy your sun protection products from our website or our retail stores: every purchase helps you prevent cancer and contributes financially to our work. Help us speak out and create a cancer-smart community: the Cancer Council is a leading advocate for cancer prevention and improved patient services. You can help us speak out on important cancer issues and help us defeat cancer by living and promoting a cancer-smart lifestyle. To find out more about how you or your family and friends can help, please call 1300 780 113. 64 Cancer Council NSW
  • 67. Regional offices Northern Sydney and South West Region Central Coast Region 1/ 37 Tompson Street The Hive, Erina Fair Wagga Wagga NSW 2650 622-650 Terrigal Drive Ph: (02) 6937 2600 Erina NSW 2250 Fax: (02) 6921 3680 Ph: (02) 4367 5895 Fax: (02) 8302 3500 Southern Region 1 Lowden Square Far North Coast Region Wollongong NSW 2500 101-103 Main Street Ph: (02) 4225 3660 Alstonville NSW 2477 Fax: (02) 4225 1700 Ph: (02) 6627 0300 Fax: (02) 6628 8659 Central and Southern Sydney Region Hunter Region 153 Dowling Street 22 Lambton Road Woolloomooloo NSW 2011 Broadmeadow NSW 2292 (PO Box 572 Ph: (02) 4961 0988 Kings Cross NSW 1340) Fax: (02) 4961 0955 Ph: (02) 9334 1900 Fax: (02) 9334 1739 Mid North Coast Region 121 High Street Western Sydney Region Coffs Harbour NSW 2450 43 Hunter Street Ph: (02) 6651 5732 Parramatta NSW 2150 Fax: (02) 6652 1530 Ph: (02) 9687 1399 Fax: (02) 9687 1118 North West Region Shop 2 Western Region 218 Peel Street 84 Byng Street Tamworth NSW 2340 Orange NSW 2800 Ph: (02) 6766 1164 Ph: (02) 6361 1333 Fax: (02) 6766 7053 Fax: (02) 6361 1863 Regional offices 65
  • 68. Cancer Council Helpline 13 11 20 For support and information on cancer and cancer-related issues, call the Cancer Council Helpline. This is a free and confidential service. For further information and details please visit our website: www.cancercouncil.com.au CAN1137 Date: 10/08 ABN 51 116 463 846