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A practical guide to understanding cancer ‘My surgeon says I will never be the same again. But I refuse to be a victim of cancer, and more a victor – with the opportunity to enjoy life.’ Jacob, diagnosed with laryngeal cancer in 2011 About this booklet 1 About this booklet This booklet is about cancer of the voicebox (larynx), which is also called laryngeal cancer. We hope it answers some of your questions and helps you cope with some of the feelings you may have. We’ve also listed other sources of support and information, which we hope you’ll find useful. We can’t advise you about the best treatment for you. This information can only come from your doctor, who knows your full medical history. In this booklet, we’ve included comments from people who have had laryngeal cancer, which you may find helpful. Some are from Jacob, who is also on the cover of this booklet. He has chosen to share his story with us. Others are from members of our online community (macmillan.org.uk/community). If you’d like to discuss this information, call the Macmillan Support Line free on 0808 808 00 00, Monday to Friday, 9am to 8pm. If you’re hard of hearing, you can use textphone 0808 808 0121, or Text Relay. For non-English speakers, interpreters are available. Alternatively, visit macmillan.org.uk 2 Understanding cancer of the voicebox (larynx) Turn to pages 107–112 for some useful addresses and websites, and page 113 to write down any notes or questions you have for your doctor or nurse. We’ve also included a leaflet that you can remove in the back of this booklet. It has some useful questions to ask your doctor or nurse about treatment. There is space to write down the answers, or your own notes or questions. You may want to take it with you to your appointments. Finding out the answers to your questions may help you feel less anxious. If you find this booklet helpful, you could pass it on to your family and friends. They may also want information to help them support you. Contents 3 Contents The larynx and laryngeal cancer 5 Diagnosing laryngeal cancer 15 Treating laryngeal cancer 25 After your treatment 75 Your feelings and relationships 83 Work and financial support 95 Further information 101 The larynx and laryngeal cancer 5 The larynx and laryngeal cancer What is cancer? 6 The larynx 8 The lymphatic system 10 Risk factors and causes 12 Symptoms13 6 Understanding cancer of the voicebox (larynx) What is cancer? Cancer starts in cells in our body. Cells are tiny building blocks that make up the organs and tissues of our bodies. They divide to make new cells in a controlled way. This is how our bodies grow, heal and repair. Cells receive signals from the body telling them when to divide and grow and when to stop growing. When a cell is no longer needed or can’t be repaired, it gets a signal to stop working and die. Cancer develops when the normal workings of a cell go wrong and the cell becomes abnormal. The abnormal cell keeps dividing, making more and more abnormal cells. These eventually form a lump (tumour). Not all lumps are cancerous. Doctors can tell if a lump is cancerous by removing a small sample of tissue or cells from it. This is called a biopsy. The doctors examine the sample under a microscope to look for cancer cells. Normal cells Cells forming a tumour The larynx and laryngeal cancer 7 A lump that is not cancerous (benign) may grow but cannot spread to anywhere else in the body. It usually only causes problems if it puts pressure on nearby organs. A lump that is cancer (malignant) can grow into nearby tissue. Sometimes, cancer cells spread from where the cancer first started (the primary site) to other parts of the body. They can travel through the blood or lymphatic system (see pages 10–11). When the cells reach another part of the body, they may begin to grow and form another tumour. This is called a secondary cancer or a metastasis. We have a video on our website that explains how cancer develops. You can watch it at macmillan.org.uk/informationand-support 8 Understanding cancer of the voicebox (larynx) The larynx The larynx is the voicebox. It is in the neck, above the windpipe (trachea) and in front of the gullet (oesophagus). The windpipe is the tube that takes air to and from the lungs. The gullet is the tube that food goes down when you eat. The larynx is tube-shaped and about 5cm (2in) long. The larynx and surrounding area Epiglottis Larynx Windpipe (trachea) Vocal cords Gullet (oesophagus) The larynx and laryngeal cancer 9 The larynx allows the air you breathe to reach your lungs. It has a flap of skin at the top, called the epiglottis. This directs food and liquid down the gullet and prevents food and drink from going into the windpipe when you swallow. The larynx contains the two vocal cords, which vibrate together when air passes between them to produce the sound of your voice. The front of the larynx can be seen or felt as the lump in the front of the neck known as the Adam’s apple. The larynx has three main parts: •• supraglottis – the area above the vocal cords •• glottis – the middle area where the vocal cords are •• subglottis – the area below the vocal cords that connects to the windpipe. Types of laryngeal cancer Most cancers of the larynx are squamous cell carcinomas. This means the cancer starts in the thin, flat cells (squamous cells) that line the larynx. There are some rarer types of laryngeal cancer. These include sarcomas, lymphomas, adenocarcinomas and neuroendocrine carcinomas. This booklet covers treatment for squamous cell cancer of the larynx. For information about the rarer types of laryngeal cancer, contact our cancer support specialists on 0808 808 00 00. 10 Understanding cancer of the voicebox (larynx) The lymphatic system Close to the larynx are lymph nodes, also known as lymph glands. Cancer of the larynx can sometimes spread to nearby lymph nodes. Lymph nodes are part of the lymphatic system. The lymphatic system Neck (cervical) lymph nodes Thymus Armpit (axillary) lymph nodes Diaphragm Spleen Groin (inguinal) lymph nodes The larynx and laryngeal cancer 11 The lymphatic system helps to protect us from infection and disease. It also drains lymph fluid from the tissues of the body before returning it to the blood. The lymphatic system is made up of fine tubes called lymphatic vessels that connect to groups of lymph nodes throughout the body. Lymph nodes are small and bean-shaped. They filter bacteria (germs) and disease from the lymph fluid. When you have an infection, lymph nodes often swell as they fight the infection. 12 Understanding cancer of the voicebox (larynx) Risk factors and causes The exact cause of laryngeal cancer is not known, but certain risk factors can affect the chances of developing it. Having a risk factor for cancer doesn’t mean you’ll definitely get it. Some people with risk factors never develop cancer, and other people without any known risk factors can still develop it. Around 2,360 people in the UK are diagnosed with cancer of the larynx each year. This type of cancer is rare in people under 40. It’s more common in people in their 60s and 70s. It is five times more common in men than in women. The main risk factors are smoking tobacco and, to a lesser extent, drinking alcohol. There may be other factors that increase the risk of developing laryngeal cancer, but more research is needed. Smoking The longer a person smokes for and the more they smoke, the greater the risk of developing laryngeal cancer. Alcohol Drinking a lot of alcohol, especially spirits, over a long period of time increases a person’s risk of getting laryngeal cancer. The risk is much higher for people who are both smokers and heavy drinkers. As with other cancers, cancer of the larynx is not infectious and cannot be passed on to other people. The larynx and laryngeal cancer 13 Symptoms Your symptoms will depend on where in the larynx the cancer is. Most cancers begin on one of the vocal cords or near to them. The most common symptom is changes to your voice, such as hoarseness. A change in your voice may be an early symptom of laryngeal cancer affecting the vocal cords (glottis – see page 9). If you’ve had hoarseness for more than three weeks, your GP (family doctor) should refer you to a hospital for tests. Occasionally, the first symptoms may be a lump in the throat or neck, or discomfort or pain when chewing or swallowing. These symptoms are more common when the cancer starts in a part of the larynx that is above the vocal cords (supraglottic laryngeal cancer – see page 9). Other less common symptoms include feeling breathless or a persistent cough, which may happen when the cancer is affecting the area below the vocal cords, near to the windpipe (subglottis – see page 9). This is very rare. If you have any of the above symptoms, it’s important to let your GP know. They can all be caused by other conditions, but it’s important to get them checked. Diagnosing laryngeal cancer 15 Diagnosing laryngeal cancer How it is diagnosed 16 Further tests 18 Staging and grading 22 16 Understanding cancer of the voicebox (larynx) How it is diagnosed Usually you begin by seeing your GP, who will ask about your symptoms and examine you. They may arrange for you to have some tests. You may be referred to an ear, nose and throat (ENT) doctor or a special clinic that does tests for the symptoms you have. At the hospital The specialist will ask about your symptoms, your general health and whether you are taking any medicines. They will also feel for any lumps in your neck. These may be caused by swollen lymph nodes, but can be due to other medical conditions, such as a swollen salivary gland. Nasendoscopy You will have this test in the outpatient clinic. Your doctor will pass a thin, flexible tube called a nasendoscope into your nose, over the back of your tongue and down into the upper part of your throat. The tube has a light at the end to help the doctor get a better view of the back of your mouth and throat. You might find this a bit uncomfortable, but it only takes a few minutes. Before the procedure, you may be given an anaesthetic lozenge to suck, or the doctor may spray your throat with an anaesthetic to numb it. Some people prefer to have this done without the anaesthetic spray. You should not eat or drink anything for about an hour after the test, or until the numbness wears off. This is because there’s a risk that food and drink may go down the wrong way into your lungs when you swallow. You could also burn your mouth or throat with hot food or drinks. Diagnosing laryngeal cancer 17 Laryngoscopy You will have this done if the doctor sees anything unusual in your throat, or cannot see the larynx clearly with the nasendoscope. You’ll need to have a general anaesthetic for this test so that the doctor can examine all of your larynx using a laryngoscope. This is a thin, metal tube with a light on the end, which the doctor passes down your throat. They can examine the larynx very closely and may use a camera, attached to the tube, to take photos. Biopsy During the laryngoscopy, the doctor takes a small sample of cells or tissue (biopsy) from any abnormal looking areas. This is the most important test to diagnose cancer of the larynx. A doctor called a pathologist will examine the sample under a microscope and check for cancer cells. It may take about 7 to 10 days for your results come back. Fine needle aspirate (FNA) You may have this test if you have a lump in your neck. You can have it in the outpatient clinic. The doctor passes a fine needle into the lump and withdraws (aspirates) some fluid or tissue into a syringe. You might have an ultrasound scan at the same time to help your doctor guide the needle into the correct area. This is a scan that uses sound waves to build a picture. After the test, a doctor will examine the sample under a microscope to check for cancer cells. 18 Understanding cancer of the voicebox (larynx) Further tests If the biopsy or fine needle aspirate show there are cancer cells in the larynx, you will need further tests. Blood tests There isn’t a specific blood test that can detect laryngeal cancer, but blood tests may be done to check your general health. Chest x-ray This uses x-rays to take a picture of your chest, to check your lungs and heart. CT (computerised tomography) scan A CT scan takes a series of x-rays, which build up a three-dimensional picture of the inside of the body. The scan takes 10 to 30 minutes and is painless. It uses a small amount of radiation, which is very unlikely to harm you and will not harm anyone you come into contact with. You will be asked not to eat or drink for at least four hours before the scan. You may be given a drink or injection of a dye, which allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. It’s important to let your doctor know if you are allergic to iodine or have asthma, because you could have a more serious reaction to the injection. You’ll probably be able to go home as soon as the scan is over. Having a CT scan 20 Understanding cancer of the voicebox (larynx) MRI (magnetic resonance imaging) scan This test uses magnetism to build up a detailed picture of areas of your body. The scanner is a powerful magnet, so you may be asked to complete and sign a checklist to make sure it’s safe for you. The checklist asks about any metal implants you may have, for example a pacemaker, surgical clips or bone pins. You should also tell your doctor if you’ve ever worked with metal or in the metal industry, as very tiny fragments of metal can sometimes lodge in the body. If you do have any metal in your body, it’s likely that you won’t be able to have an MRI scan. In this situation, another type of scan can be used. Before the scan, you’ll be asked to remove any metal belongings including jewellery. Some people are given an injection of dye into a vein in the arm, which doesn’t usually cause discomfort. This is called a contrast medium and can help the images from the scan to show up more clearly. During the test, you’ll lie very still on a couch inside a long cylinder (tube) for about 30 minutes. It’s painless but can be slightly uncomfortable, and some people feel a bit claustrophobic. It’s also noisy, but you’ll be given earplugs or headphones. You can hear, and speak to, the person operating the scanner. Diagnosing laryngeal cancer 21 PET-CT scan This is a combination of a CT scan, which takes a series of x-rays to build up a three-dimensional picture (see page 18), and a positron emission tomography (PET) scan. A PET scan uses low-dose radiation to measure the activity of cells in different parts of the body. PET-CT scans give more detailed information about the part of the body being scanned. You may have to travel to a specialist centre to have one. You can’t eat for six hours before the scan, although you may be able to drink. A mildly radioactive substance is injected into a vein, usually in your arm. The radiation dose used is very small. The scan is done after at least an hour’s wait. It usually takes 30 to 90 minutes. You should be able to go home after the scan. Waiting for test results Waiting for test results can be a difficult time. It may take from a few days to a couple of weeks for the results of your tests to be ready. You may find it helpful to talk with a partner, family member or close friend. Your specialist nurse or one of the organisations listed on pages 107–112 can also provide support. You can also talk to one of our cancer support specialists on 0808 808 00 00. 22 Understanding cancer of the voicebox (larynx) Staging and grading Staging The stage of a cancer describes its size and if it has spread from where it first started. This information helps your doctors decide on the best treatment for you. Staging aims to find out how much of the larynx and surrounding area is affected. It also finds out whether the cancer has spread to lymph nodes nearby, or to other areas of the body (metastasised). This is a simplified staging system for cancer of the larynx: •• Stage 0 – The cancer cells are only in the lining of the larynx. There are usually no symptoms, so the cancer is not usually diagnosed at this stage. •• Stage 1 – The cancer has grown further into the lining of the larynx where it started. The vocal cords still move normally. •• Stage 2 – The cancer is affecting another part of the larynx, but the vocal cords still move. It has not spread outside the larynx. •• Stage 3 – The movement of the vocal cords is affected. Or the cancer may have spread to one lymph node (no larger than 3cm). The cancer has spread within the larynx. •• Stage 4 – The cancer has spread into the area surrounding the larynx. It may have spread to one or more lymph nodes (which may be larger than 3cm). It may have spread to other parts of the body. In this booklet, we use the term early-stage cancer to describe laryngeal cancers that are stages 0, 1 and 2. Diagnosing laryngeal cancer 23 We use the term locally advanced cancer for stage 3 tumours and stage 4 tumours that have spread outside the larynx but not to other parts of the body. We use the term advanced cancer for stage 4 tumours that have spread to other parts of the body. Staging for cancer of the larynx is complex and will vary depending on where in the larynx the cancer started. For example, if the cancer started in the vocal cords (glottis – see page 9), it rarely spreads to other parts of the body. Your doctor will be able to tell you more about your situation. Grading Grading is about how the cancer cells look under a microscope compared with normal cells. The grade helps your doctor plan your treatment. •• Grade 1 (low-grade or well differentiated) – The cancer cells look similar to normal cells. They usually grow slowly and are less likely to spread. •• Grade 2 (moderate- or intermediate-grade) – The cancer cells look more abnormal and are slightly faster growing. •• Grade 3 (high-grade or poorly differentiated) – The cancer cells look very different from normal cells and may grow more quickly. ‘I can communicate with what is now a loud whisper. I just need to think and plan before I speak.’ Jacob Treating laryngeal cancer 25 Treating laryngeal cancer Treatment overview 26 Before treatment starts 32 Radiotherapy34 Surgery47 Speaking after a laryngectomy 58 Chemotherapy63 Targeted therapies 70 Research – clinical trials 72 26 Understanding cancer of the voicebox (larynx) Treatment overview You will usually be treated in a specialist centre by a team of healthcare professionals. The main treatments for cancer of the larynx are radiotherapy and surgery. Chemotherapy and targeted therapies (biological therapies) may also be used, but they are not usually used for early-stage cancer of the vocal cords. These treatments can be given alone or in combination. For most people, the aim is to remove or destroy the cancer and reduce the chance of it coming back. Your doctors will plan your treatment so that any long-term effects on your speech, swallowing and appearance are kept to a minimum. Your doctor and specialist nurse will explain how the different treatment options may affect you. The treatment you have will depend on: •• where the cancer is in the larynx •• the size of the cancer and whether it has spread (stage – see pages 22–23). Your doctor will also consider: •• how fast-growing the cancer is (grade – see page 23) •• your general health. If the cancer is at an early stage, it can usually be cured by radiotherapy (see pages 34–46) or by an operation through the mouth with an endoscope (see pages 48–49). For other stages, you may need a combination of surgery, radiotherapy, chemotherapy or a targeted therapy. Treating laryngeal cancer 27 If the tumour is large, you may need surgery to remove part or all of the larynx (see pages 49–52). If you have a locally advanced cancer, your doctors may recommend a combination of chemotherapy and radiotherapy (chemoradiation – see page 69) instead of surgery. Your doctor may advise you to have treatment after surgery to reduce the risk of the cancer coming back. This is called adjuvant treatment. This may be with radiotherapy or chemoradiation. Doctors sometimes give chemotherapy (see pages 63–68) to reduce the size of the cancer before radiotherapy. You may also be offered chemotherapy if the cancer has spread outside the larynx or comes back after radiotherapy. Some people have treatment with a targeted therapy drug (see pages 70–71) together with radiotherapy. If it isn’t possible to cure the cancer, your doctor will offer you treatment to help slow down the growth of the cancer and relieve symptoms. This is called palliative treatment. ‘I do try and remain positive, despite what I have been through. I often look back and think: “Did I really go through all that surgery and treatment?” But by taking things a day at a time, I got through it all. It’s not been easy sometimes, but it’s worth it in the long run.’ Chris 28 Understanding cancer of the voicebox (larynx) How treatment is planned A team of specialists will meet to discuss and agree on the best treatment for you. This multidisciplinary team (MDT) will usually include: •• a surgeon who specialises in cancer of the larynx (an ear, nose and throat specialist) •• a surgeon who specialises in plastic and reconstructive surgery •• a clinical oncologist who specialises in radiotherapy, chemotherapy and targeted therapies •• a medical oncologist who specialises in chemotherapy and targeted therapies •• a therapeutic radiographer who works closely with the doctors to plan and deliver radiotherapy •• a radiologist who helps to interpret scans and x-rays •• a pathologist who advises on the type and extent of the cancer •• a clinical nurse specialist (CNS) who offers information and support •• a speech and language therapist (SALT) who specialises in the voice, speech and swallowing •• a dietitian who can advise you if you have problems with eating, drinking or weight loss •• a restorative dentist who advises on dental care before, during and after treatment. The team may also include other healthcare professionals, such as physiotherapists, oral surgeons, social workers, counsellors or psychologists. Treating laryngeal cancer 29 Making decisions Your specialist team will consider a number of factors when advising you on your treatment options. These will include your general health, the stage of the cancer and if it has spread to other parts of the body. Your doctor and nurse will explain if there are different treatment options they can use in your situation. Sometimes people find it hard to make a decision about treatment. If you’re asked to make a choice, make sure you have enough information. You’ll need to know the different treatment options, what they involve and the possible side effects to decide what’s right for you. You may find our booklet Making treatment decisions helpful. You can order this at be.macmillan.org.uk The benefits and disadvantages of treatment Many people are frightened at the idea of having cancer treatments, particularly because of the side effects that can occur. However, these can usually be controlled with medicines. Treatment can be given for different reasons and the potential benefits will vary depending upon your individual situation. Cancer of the larynx may be cured with surgery or radiotherapy, even when it is locally advanced. Sometimes you need other treatment as well. If the cancer is advanced and has spread to other parts of the body, treatment may only be able to control it for a period of time, which can improve symptoms and quality of life. 30 Understanding cancer of the voicebox (larynx) However, for some people in this situation, the treatment will have no effect on the cancer and they will get the side effects without any of the benefit. If you’ve been offered treatment that aims to cure the cancer, deciding whether to accept it may not be difficult. However, if a cure is not possible and the purpose of treatment is to control the cancer for a period of time, it may be more difficult to decide whether or not to have treatment. Making decisions about treatment in these circumstances is always difficult, and you may need to discuss in detail with your doctor whether you wish to have treatment. If you choose not to have it, you will still be offered supportive (palliative) care, with medicines to control any symptoms. Giving your consent Before you have any treatment, your doctor will explain its aims. They will ask you to sign a form saying that you give permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form, you should be given full information about: •• the type and extent of the treatment •• its advantages and disadvantages •• any significant risks or side effects •• any other treatments that may be available. If you don’t understand what you’ve been told, let the staff know straight away so they can explain again. Some cancer treatments are complex, so it’s not unusual to need repeated explanations. Treating laryngeal cancer 31 It’s a good idea to have a relative or friend with you when the treatment is explained, to help you remember the discussion. You may also find it useful to write a list of questions before your appointment. People sometimes feel that hospital staff are too busy to answer their questions, but it’s important for you to know how the treatment is likely to affect you. The staff should be willing to make time for your questions. You can always ask for more time if you feel that you can’t make a decision when your treatment is first explained to you. You are also free to choose not to have the treatment. The staff can explain what may happen if you don’t have it. It’s essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You don’t have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice. Second opinion Your multidisciplinary team (MDT) uses national treatment guidelines to decide the most suitable treatment for you. Even so, you may want another medical opinion. If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion. Getting a second opinion may delay the start of your treatment, so you and your doctor need to be confident that it will give you useful information. If you do go for a second opinion, it may be a good idea to take a relative or friend with you, and have a list of questions ready, so that you can make sure your concerns are covered during the discussion. 32 Understanding cancer of the voicebox (larynx) Before treatment starts Your specialist doctor or nurse will usually give you advice on preparing for treatment. Smoking If you are a smoker, stopping smoking: •• may decrease the side effects of your treatment •• decreases the risk of the cancer coming back •• decreases the risk of developing a second cancer in your head and neck, and also in other parts of your body •• decreases the risk of other conditions such as heart disease. Continuing to smoke increases the risk of side effects and can make radiotherapy less effective. Smoking can be difficult to give up, especially at times of stress. If you would like to give up smoking, there are organisations and self-help groups that you may find useful (see page 108). Your GP can also give advice and prescribe nicotine replacement therapies, such as nicotine patches, gums and inhalers. We can send you our booklet Giving up smoking. Call us on 0808 808 00 00 to order a free copy. Alcohol Avoiding alcohol, particularly spirits, may help to reduce some of the side effects of your treatment. If you’d like support to help reduce your alcohol intake, ask your specialist nurse or doctor. Treating laryngeal cancer 33 Dental care Your doctor or nurse will advise you to visit a dentist or oral surgeon for a check-up and to have any necessary treatment. Making sure your teeth or dentures are in good condition reduces the risk of possible problems with your mouth during and after treatment. You can find out more about looking after your mouth and teeth during and after radiotherapy on page 44. There’s also information about mouth care during and after chemotherapy on page 67. 34 Understanding cancer of the voicebox (larynx) Radiotherapy Radiotherapy treats cancer by using high-energy beams to destroy cancer cells, while doing as little harm as possible to normal cells. How and when radiotherapy is used to treat cancer of the larynx depends on the stage of the cancer (see pages 22–23). Radiotherapy for early-stage cancers Radiotherapy can be used on its own if you have an early-stage laryngeal cancer. Sometimes doctors advise you to have radiotherapy when surgery is likely to affect your speech or swallowing. Radiotherapy for locally advanced cancers If the cancer is larger or has spread to lymph nodes (glands) or tissue nearby, you may have radiotherapy in combination with other treatments. Radiotherapy can be given: •• after surgery to destroy any remaining cancer cells and reduce the risk of cancer coming back (adjuvant radiotherapy) •• after surgery, together with chemotherapy (adjuvant chemoradiation) •• instead of surgery, together with chemotherapy (chemoradiation) •• with a targeted therapy drug (see pages 70–71). The aim of radiotherapy for early and locally advanced cancer of the larynx is to cure the cancer. This is called radical radiotherapy. Treating laryngeal cancer 35 Radiotherapy for advanced cancers Sometimes it isn’t possible to cure the cancer and the main aim of treatment is to reduce the symptoms (palliative radiotherapy). Radiotherapy can be used to shrink a tumour that is causing swallowing or breathing problems. It can also relieve symptoms if the cancer has spread to other parts of the body. How radiotherapy is given Treatment is usually given as a course of short, daily treatments in the hospital radiotherapy department. Each treatment is called a fraction. Radiotherapy can be given in different ways and you will usually have it as an outpatient. The treatments are normally given each day from Monday to Friday, with a rest at the weekend. However, sometimes you may also have treatment at the weekend, or more than one treatment each day – this is called hyperfractionation. Radiotherapy treatment can last between 3 to 7 weeks. Your clinical oncologist (see page 28) will talk to you about the length of your course of treatment and possible side effects. If you’re having radiotherapy to relieve symptoms, you may only need a short course or a single dose. 36 Understanding cancer of the voicebox (larynx) Ways of giving radiotherapy Conformal radiotherapy (CRT) This is one way of giving radiotherapy for early laryngeal cancers. A special attachment to the radiotherapy machine shapes the radiation beams to match the shape of the cancer. This reduces the radiation received by surrounding healthy cells. Intensity-modulated radiotherapy (IMRT) and image-guided radiotherapy (IGRT) These treatments are now available in most hospitals. IMRT accurately shapes the radiotherapy beams and allows different doses to be given to different parts of the treatment area. This can reduce the damage to healthy tissue. IGRT involves having images taken before each treatment. These are used to check that you are in exactly the right position for treatment. When possible, doctors use both IMRT and IGRT to treat locally advanced and advanced laryngeal cancer. These treatments can help reduce the risk of some long-term radiotherapy side effects, such as damage to the salivary glands, which causes a dry mouth. Planning your radiotherapy Your treatment will be carefully planned by a doctor called a clinical oncologist to make sure it’s as effective as possible. You will have a CT scan taken of the area to be treated. This scan takes lots of images from different angles to build up a 3D (three-dimensional) picture of the area. The information from the scans is put into a computer that is used to help your doctors plan your treatment precisely. Treatment usually starts a week or so after your planning appointment. Planning is important and may take a few hours. During the visit, the staff in the radiotherapy planning department will explain what to expect during your treatment. Treating laryngeal cancer 37 Our booklet Understanding radiotherapy gives detailed information about radiotherapy and its side effects. You can order a copy at be.macmillan.org.uk Radiotherapy masks It’s important that you’re able to lie still, in exactly the same position, each time the treatment is given. To help you to do this, a special mask (or shell) of your head and shoulders is made. Before each treatment, the radiographer fits the mask over your head and neck. They then fix the mask to the couch to hold you in the right position. This ensures the radiotherapy rays are directed at the exact area each time you have your radiotherapy treatment. There’s a photo of someone having their mask fitted on page 41. The mask is made of a plastic mesh and designed so you can see and breathe normally while you’re wearing it. It is usually made on your first visit to the radiotherapy planning department. The radiographer or the mask room technician will explain the whole process to you before your mask is made. Marks are drawn on the mask to show the radiographer where the radiotherapy rays will be directed. ‘My tip is to close your eyes when the mask is fitted and remember to take slow, deep breaths. Ask the radiographers to play some music during your treatment, as it does relax you.’ Joycee 38 Understanding cancer of the voicebox (larynx) You will need to wear the mask for the planning session and you won’t be able to speak while you have the mask on. The radiographers will tell you how to signal to them if you want to communicate. Having the mask made won’t hurt, but some people feel claustrophobic at first. Most people soon get used to it. You will have it on for up to 15 minutes at a time. If you feel anxious, tell your doctor or nurse. There are medicines that can help reduce feelings of anxiety. There are also some deep breathing relaxation exercises that your nurse may be able to teach you. Treatment Before each session of radiotherapy, the radiographers will position you carefully on the radiotherapy treatment couch with the mask fitted. They will make sure you’re comfortable. The treatment only takes a few minutes. During this time, you’ll be left alone in the room. You will have to lie still while the treatment is given. You won’t feel the radiotherapy when it’s given. The radiographers will watch you using a closed circuit television screen (CCTV). You can raise your arm to signal to them if you need to. Some treatment rooms have CD or MP3 players so you can listen to music to help you relax during your treatment. If you’d like to listen to your own music, ask your radiographers if this is possible. You may hear a slight buzzing noise from the radiotherapy machine while your treatment is being given. Radiotherapy does not make you radioactive and it’s perfectly safe for you to be with other people, including children and pregnant women, throughout your treatment. Treating laryngeal cancer 39 Side effects of radiotherapy Radiotherapy can cause some general side effects. These usually disappear gradually over a few weeks or months after treatment finishes. How you are affected will depend on the dose of radiotherapy, the length of your treatment and the size of the area being treated. Side effects can be more severe if you have radiotherapy combined with chemotherapy. Side effects usually begin to develop after two weeks of radiotherapy. They may continue to get worse for 7 to 10 days after treatment ends before starting to gradually improve. Most people find that their side effects improve about 4 to 8 weeks after radiotherapy finishes, or when combined treatments end. Before you start your treatment, your doctor, nurse, speech and language therapist, dietitian or radiographer will discuss your treatment with you so you know what to expect. Let them know about any side effects you have during or after treatment, as there are often things that can be done to help. Tiredness (fatigue) Radiotherapy often makes you feel tired, especially towards the end of treatment and if you’re travelling a long way each day. Try to rest regularly. It can help to balance this with some gentle physical activity, such as short walks. This will help you feel more energetic. We have a booklet called Coping with fatigue (tiredness). Call us on 0808 808 00 00 or visit be.macmillan.org.uk to order a free copy. 40 Understanding cancer of the voicebox (larynx) Skin changes The skin at the front of your neck will gradually become red or darker. If you’re dark skinned, your skin may get darker or develop a blue or black tinge. Your skin may also feel sore and itchy, like sunburn. Skin changes can vary depending on the amount of radiotherapy you have. Changes usually start about two weeks after radiotherapy begins and last until about four weeks after it finishes. Your radiographer or specialist nurse will tell you how to look after the skin in the treated area. During your treatment, you will usually be advised to do the following: •• Wear loose cotton or natural fibre clothing next to your skin with no tight collars. When you’re outside, use a scarf to protect your skin from the sun or cold winds. •• Wash your skin gently with soap or aqueous cream and lukewarm water and gently pat it dry. •• Use a moisturiser that is sodium lauryl sulphate (SLS) free. Your radiographer can give you more information about this. •• Avoid using scented products on the treated area, as these can irritate the skin. Check with your radiographer or nurse before you put anything on your skin in the treated area. •• Avoid rubbing the skin. •• Avoid wet shaving until a few weeks after your radiotherapy treatment. You can use an electric razor instead. •• Avoid the sun and use a high-SPF sunscreen. Your radiographer can give you more information about this. If you develop a skin reaction, such as soreness or a change in skin colour, let the radiotherapy staff know as soon as possible. They will advise you on the best way to manage it. Treating laryngeal cancer 41 After your treatment has finished, you’ll need to protect the skin in the treated area from strong sunshine for at least a year and cover the area with a light scarf. Once any skin reaction has settled down, you should use a suncream with a sun protection factor (SPF) of at least 30. The radiotherapy staff will advise you on how to look after your skin. They can prescribe creams for you to use if your skin becomes very sore. If your skin peels or cracks, you may need a dressing on the area. A district nurse or practice nurse from your GP surgery can do this for you or teach you or a friend or relative how to do it. Fitting a radiotherapy mask 42 Understanding cancer of the voicebox (larynx) Sore throat and difficulty swallowing The lining of your throat may become sore and inflamed, making it difficult to swallow. Your doctor can prescribe liquid painkillers to help with this. Try to take these before meal times to help make eating easier. Your speech and language therapist will talk to you about any swallowing or eating difficulties that you may have. It’s important to try to continue to eat and drink for as long as possible during your treatment. You may cough when you eat and drink. Sometimes this can be a sign that food and drink is going down the wrong way (into the airway). This can cause a chest infection. Your speech and language therapist can teach you exercises to help with swallowing and prevent food and drink going down the wrong way. Your specialist nurse, radiographer, dietitian or speech and language therapist will give you advice on foods that are easy to swallow. They may also give you nutritious or high-calorie drinks. Most people manage to eat soft, moist foods while their throat is sore. Some people can only manage a liquid diet. The soreness usually lasts for a few weeks after the radiotherapy has finished, but may continue for longer, depending on the area treated. Some people find the soreness stops them eating or drinking enough. This is more common if you have radiotherapy and chemotherapy at the same time (chemoradiation). If this happens, your doctor might suggest you have nutritional support so that you don’t lose too much weight. This means giving you liquid food that contains all the nutrients you need, through a feeding tube that goes into your stomach. You can also have liquids and medicines through the tube. If your doctors think you might have problems with eating, they may suggest you have a feeding tube put in before starting your treatment. Treating laryngeal cancer 43 Nutritional support can: •• prevent weight loss •• make sure you’re getting enough fluids and nutrients •• help you feel less weak or tired •• ease the pressure of having to eat •• allow the sore area to heal •• allow you to eat smaller amounts when eating is uncomfortable. The liquid feeds can be given through one of the following: •• A thin tube that’s passed up your nose and down into your stomach (called a nasogastric or NG tube). This type of tube is usually only used if you are an inpatient. •• A tube that’s put through the skin and into the stomach (called a percutaneous endoscopic gastrostomy or PEG tube). Your doctor and dietitian will talk to you about this and explain which tube is likely to be best for you. You may need help with nutrition before radiotherapy if you have lost a lot of weight or have swallowing problems. Having liquid feeds through a tube will give you enough calories to help prevent any unplanned breaks in your treatment. Your nurse or dietitian will help you look after your feeding tube and show you or a relative or friend how to care for it when you are at home. Your speech therapist will assess whether you can still swallow food and fluids safely while you have a tube in. You will still be encouraged to eat and drink with a tube in place, even if you can only manage small amounts at a time. 44 Understanding cancer of the voicebox (larynx) Once your treatment has finished, you are usually encouraged to try to stop using the tube as soon as possible. It’s important to follow the advice of your hospital team when you have a feeding tube in. We can send you more information about nutritional support and more detailed booklets about diet and coping with eating problems. Call 0808 808 00 00 or visit be.macmillan.org.uk to order. Dry mouth or throat Radiotherapy to the larynx may affect the salivary glands, making you produce less saliva. The lining of your mouth and throat can become dry. This can make eating and speaking difficult. Saliva helps keep your mouth clean. So it’s important to brush your teeth with a soft toothbrush twice a day and to use mouthwashes as explained to you by your doctor or nurse. Try drinking sips of water regularly throughout the day to keep your mouth moist. Your doctor can prescribe artificial saliva sprays and gels to help. You are less likely to get an infection if your mouth is moist. Some people may have a dry mouth for several months after treatment has finished. For some people, it may be permanent. It depends on the size of the area being treated. Your doctor will be able to tell you how likely this is. We can send you more information about coping with a dry mouth. Thick, sticky saliva (mucus) You may have a build-up of sticky mucus in your throat. It’s a good idea to always have tissues handy, as you might need to spit often to get rid of this. Rinsing your mouth and drinking water regularly can help with the mucus. Your doctor or specialist nurse may suggest that you use a nebuliser. This is a machine that produces a fine mist of fluid, which you inhale. Treating laryngeal cancer 45 Voice changes Your voice may already be hoarse and it may get worse during radiotherapy. Your doctor will tell you about the risk of permanent voice changes. Try to rest your voice by not straining it and avoid smoky places. Your voice should gradually improve and get stronger after your radiotherapy is over. This may take several weeks. A speech and language therapist can advise you on how to look after your voice during treatment and suggest voice exercises to speed up your recovery. Loss of appetite You may not feel like eating if your mouth is sore. This can be at its worst towards the end of radiotherapy and in the first couple of weeks after it’s finished. It’s important to try to eat, even if you don’t feel like it. Sometimes it can help to have painkillers before you eat if your mouth is feeling very sore. You can also see a dietitian, who may ask you to have some high-calorie or nutritious drinks until your appetite returns. Loss of taste Your sense of taste may change or you may find everything tastes the same. This should get better, but it may take a few months and sometimes up to a year after radiotherapy has finished. Occasionally, taste can be affected permanently. Hair loss Radiotherapy may cause some temporary hair loss over the back of your head. If you have any facial hair, it may fall out and this can be permanent. Breathing problems Radiotherapy may cause swelling in your throat. Very rarely, this can lead to breathing problems, which need to be treated straight away. 46 Understanding cancer of the voicebox (larynx) If you develop any difficulties with your breathing or if your breathing sounds different, tell a doctor or contact the hospital as soon as possible. Very rarely, people need an operation to help them breathe. This is called a temporary tracheostomy, and it should be short term (see page 50). Smoking If you are a smoker and continue to smoke during a course of radiotherapy treatment, it can make the radiotherapy less effective and increase the risk of side effects. Giving up smoking can be difficult, but there’s lots of support available. Speak to your doctor or call a stop-smoking helpline for further advice and to find out where your local stop-smoking service is (see page 108). Treating laryngeal cancer 47 Surgery The type of surgery you have will depend on the stage of the cancer. Surgery is used: •• if the cancer is small enough to be removed through the mouth using an endoscope with a laser (high-power light) or small surgical instruments •• when the cancer is locally advanced •• if radiotherapy has not completely got rid of all the cancer (this is rare) •• if the cancer comes back after radiotherapy. Before your operation The main aim of surgery is to remove the cancer completely. Your surgeon will also try to reduce any changes that an operation may have on your speech and swallowing. Before the operation, the surgeon will explain the procedure to you. It’s important you understand what it involves and how it will affect you in the short and long term. You will usually meet other members of the MDT before your surgery. This can include a specialist nurse, a speech and language therapist and a dietitian (see page 28). They can provide support and advice before and after the operation. You’ll have some tests to make sure you’re fit enough for the operation. These are likely to include blood tests, a chest x-ray and an electrocardiogram (ECG) to check your lungs and heart. You may have these done at a pre-assessment clinic before you go into hospital. 48 Understanding cancer of the voicebox (larynx) Types of operation There are different operations used to treat cancer of the larynx: •• Removing the cancer through the mouth (endoscopic resection or transoral laser microsurgery – TLM). •• Removing part of the larynx (partial laryngectomy). •• Removing all of the larynx (total laryngectomy). Endoscopic resection and transoral laser microsurgery (TLM) Your surgeon may be able to remove the cancer through your mouth if you have early-stage cancer. This type of surgery is called transoral (through the mouth) surgery and means you will not have a wound in your neck afterwards. It’s done with a general anaesthetic and you only need a short stay in hospital. The surgeon passes an endoscope (a thin, flexible tube with a camera at the end) into your throat. They use the camera to show images on a screen in the operating theatre. They then guide small surgical instruments through the endoscope or use a laser to remove the cancer. If a laser is used, it‘s called transoral laser microsurgery (TLM). The surgeon directs the laser beam at the tumour and removes the cancer and a small margin of healthy tissue. This is to try to make sure they’ve removed all the cancer cells. They use the laser to control bleeding during surgery. Sometimes, instead of holding the instruments themselves, the surgeon uses a machine that holds the surgical instruments. The surgeon controls the robotic arms, which can move very steadily and precisely to remove the tumour through the mouth. This is called transoral robotic surgery (TORS). Treating laryngeal cancer 49 After an endoscopic resection You may have some pain in your throat and difficulty swallowing for about two days afterwards. You can take painkillers until this improves. If the surgery involved a vocal cord, your voice may be hoarse. Your doctor might ask you to rest it for a few days. Some people may find they’re left with a permanent change to their voice. If this happens, your surgeon can refer you to a speech and language therapist. Rare side effects of this type of surgery include bleeding, infection and damage to your teeth. Your doctor or specialist nurse will give you more information about this before you go home. Partial laryngectomy This is where the surgeon makes a cut in the neck and removes the affected part of the larynx. This operation is only used rarely, as people are usually offered radiotherapy or chemoradiation instead. After a partial laryngectomy, you should be able to speak because you’ll still have part of your voicebox. However, your voice is likely to be weak or hoarse. Removing lymph nodes During your operation, the surgeon may also remove some lymph nodes to check for cancer cells, or to remove affected lymph nodes. This is called a neck dissection. Your surgeon will discuss this with you before your operation. The nodes that are removed are sent to a laboratory to be examined for cancer cells. After the operation, your neck and shoulder may be stiff on the side where the surgery took place. A physiotherapist can teach you some exercises to help with this. 50 Understanding cancer of the voicebox (larynx) Temporary tracheostomy Sometimes, surgery to the larynx can cause swelling in your neck. This is temporary, but it can narrow your airway and may affect your breathing. If this happens, the surgeon will make a small opening in your windpipe that you can breathe through until the swelling goes down. This is called a tracheostomy. The opening at the front of your neck is held open with a small, plastic tube that’s a few centimetres long. When the swelling goes down (after about 5 to 7 days) and you can breathe easily, you will have the tube taken out. The opening heals over naturally. If you have a tracheostomy, you won’t usually be able to speak with the tube in place. Your speech and language therapist will give you advice on how to cope with this. Your surgeon will tell you in advance if you’re likely to have a tracheostomy for a short time after your operation. This gives you time to prepare. You can ask questions before your operation – this can help reduce any anxiety you might have. The specialist nurse or speech and language therapist will talk to you about having a tracheostomy before your operation. Total laryngectomy Some people need an operation to remove all of the voicebox in order to remove all of the cancer. Your doctors may offer this if they feel that radiotherapy may not cure the cancer. You may also need to have some lymph nodes in the neck removed (see page 49). When the surgeon removes the whole larynx, there is no longer a connection between your mouth, nose and lungs. This means that you will breathe and speak in a different way. You will breathe through a hole in your neck, called a stoma. You will no longer have vocal cords to produce a voice, but will be able to speak using a choice of different ways to communicate (see pages 58–61). Treating laryngeal cancer 51 Laryngectomy stoma A laryngectomy stoma is a permanent hole in the windpipe made by the surgeon. It will be in the lower part of your neck and you will breathe through it. The stoma stays open on its own. Some people need a temporary tube to keep their stoma open for the first few days after surgery, but this is rare. Laryngectomy stoma Gullet (oesophagus) Laryngectomy stoma Windpipe (trachea): air goes to and from the lungs The thought of having a laryngectomy stoma can be frightening. But you’ll be given a lot of support and information from your healthcare team. 52 Understanding cancer of the voicebox (larynx) You have your stoma for the rest of your life and you breathe through it from the time of your operation. Your surgeon, specialist nurse and speech and language therapist will talk to you about this before your operation. When you’re well enough, your nurse will teach you how to clean and take care of the stoma. You can continue to get support from your healthcare team for as long as you need it. After your operation You will usually be taken back to the ward after your operation. You may be looked after in an intensive-care or high-dependency unit at first. The doctors and nurses can make sure your breathing is safe and your pain is well controlled. This is usually only for a few days. After your operation, you will be encouraged to start moving around as soon as possible. This is an important part of your recovery. It’s important to do regular leg movements and deepbreathing exercises. A physiotherapist will explain these to you. Breathing and speaking After a total laryngectomy, you will start to breathe through the stoma straight away. You may need extra oxygen to help with your breathing for a short while. The nurses give you oxygen through a special mask, which fits over your stoma. You might notice you have mucus in your airway and that you cough a lot in the beginning. This should settle within a week. Your nurse will use a thin, flexible tube (suction tube) to remove the mucus until you get used to the changes in your breathing. The nurses and physiotherapist will also give you breathing exercises to help with this. Treating laryngeal cancer 53 ‘Plenty of large, man-size tissues are needed to begin with, as coughing up mucus is predictable. I also found open-necked shirts easier so you can get to the stoma site quicker.’ Chris You won’t be able to speak at first, but you can communicate by mouthing words, writing or using a communication chart. On pages 58–61 we discuss the different ways of communicating after laryngeal surgery. Pain Your doctor or nurse will explain to you how any pain will be controlled or prevented after your surgery. You may be given pain relief through a syringe connected to an electronic pump. The pump is set to give you a continuous dose of painkiller (analgesia). You may also have a hand control with a button to press if you feel sore. This is called patient-controlled analgesia (PCA). It’s designed so you can’t have too much painkiller, so it’s okay to press it whenever you’re uncomfortable. Always let the nurses know if you’re in pain. Drips and drains You may have several drips and drains in place for a few days after surgery. You will be encouraged to get out of bed and move around from the first day after surgery, so you will be given help with these. 54 Understanding cancer of the voicebox (larynx) You will have some thin tubes (wound drains) that drain fluid from your operation site and allow your wound to heal. Let your doctor or nurse know if these are uncomfortable. They are usually taken out 2 to 4 days after surgery. A drip going into a vein in your arm will give you fluids for a few days. You will also have a feeding tube for liquid foods and medicines. You should be able to eat and drink again once your throat has healed, usually after 1 to 2 weeks. You will need to build up your eating gradually. The hospital dietitian can give you advice about this. Coping and support It can take time to recover from surgery to the larynx. Some people are worried about the change in their appearance after a laryngectomy. You may feel embarrassed about your stoma. This can affect your confidence and may be distressing. It often takes time to adjust and come to terms with learning to speak in a different way and to breathe through a stoma. ‘After I had my laryngectomy, it was a new world. All that was going through my mind was, “When was I going to feel like a normal person again?” But with the help of my speech therapist and all those who gave me support at the hospital, I learned to speak again, which was a huge thing.’ Stewart Treating laryngeal cancer 55 It can help to let your family and close friends know how you feel. Your doctor, nurse and speech and language therapist at the hospital can give you advice and support. They may put you in touch with someone in your area who has had a laryngectomy. The National Association of Laryngectomee Clubs and the Cancer Laryngectomee Trust can put you in touch with your nearest group and give you information. See page 107 for more information. Living with a laryngectomy stoma You’ll be given lots of information and advice about your stoma, but getting used to it will take time. Try not to worry if it doesn’t make sense straight away. Stoma filters When you breathe in through your stoma, air will go directly down into your lungs. Because it isn’t warmed and moistened by your mouth and nose, the cooler, drier air can irritate your lungs. This can make you produce more mucus (phlegm). You won’t be able to sniff or blow your nose to clear this. When you cough, the mucus is coughed up through your stoma, not your mouth. It’s important to keep the laryngectomy stoma covered with stoma covers or filters. These are also known as heat and moisture exchangers (HMEs). You attach them over the stoma to warm and moisten the air. They help to reduce the amount of phlegm you produce and prevent coughing and chest infections. Your doctor, nurse or speech and language therapist can show you how to use them. 56 Understanding cancer of the voicebox (larynx) Chest infections Breathing through a stoma makes you more likely to get chest infections. If you notice a change in the colour of your phlegm to green or dark yellow, or have a cough that doesn’t go away, it’s important to tell your doctor straight away as this may be a sign of infection. They may prescribe antibiotics for you. Reduced sense of smell and taste Your sense of smell and taste may be affected because you no longer breathe through your mouth. This can improve after a few months, although some people may have long-term problems. You may be able to learn the ‘polite yawning technique’, where you yawn with closed lips. This draws air in through the nose, allowing you to smell. It can also improve your sense of taste. Your speech and language therapist may be able to teach you how to do this. Shower aids These help prevent water going into your stoma when you shower. You can ask your specialist nurse or speech and language therapist about them. Swimming equipment You won’t be able to swim without using special equipment to stop water going into the stoma. The National Association of Laryngectomee Clubs (see page 107) can give you information about this. They also provide training to make sure you can use the equipment safely. ‘For the first six months or so, I was obsessed with finding a way to improve my voice.’ Jacob 58 Understanding cancer of the voicebox (larynx) Speaking after a laryngectomy Most people who have had a laryngectomy are able to speak afterwards, but in a different way to before their surgery. Learning to speak again is likely to feel distressing to start with and can be difficult to cope with, but alternative ways of communicating have improved. The type of communication you use will depend on your individual situation, your type of surgery and what you would prefer to use. A speech and language therapist will visit you before your operation to discuss different ways of communicating. You may be able to watch videos of people talking after a laryngectomy or meet someone who has had similar surgery. Some people find this very helpful, while others prefer to have written information or to meet someone after they have had the surgery. We have a video on our website of a speech and language therapist and someone who has had a laryngectomy. They discuss different ways to communicate, including using a voice prosthesis valve. You can watch it at macmillan.org.uk/voicerestoration Your surgeon and speech and language therapist will talk to you about putting in a small valve, called a voice prosthesis valve (see opposite), at the time of your operation. This will allow you to develop a new voice after your operation. There are other ways to help you communicate if you don’t have a valve. These include: •• an oesophageal voice •• an electrolarynx •• a combination of the two methods. Treating laryngeal cancer 59 Voice prosthesis valve The surgeon makes a channel between the windpipe and the gullet (oesophagus). This is called a trachea-oesophageal puncture (TOP). During the laryngectomy operation or at a later stage, a small valve (voice prosthesis) is put into the channel. This connects the windpipe to the gullet. The valve is one-way, which prevents food and fluids from passing into the windpipe. The position of the voice prosthesis valve between the trachea and the oesophagus Voice sounds Gullet (oesophagus) Finger blocking laryngectomy stoma Windpipe (trachea) Air from the lungs Voice prosthesis valve 60 Understanding cancer of the voicebox (larynx) When you breathe out and cover your stoma with a thumb or finger, air from the lungs passes through the valve. This vibrates in your throat to produce a sound. As with normal speech, the movements of your lips, cheeks and tongue can shape the sound into words. It may take a while to learn how to speak with a voice prosthesis. The voice can sound quite natural. In women, it’s usually a lower pitch than before the operation. Some people may have an external, ‘hands-free’ valve that allows them to speak without covering the stoma with a finger. These aren’t suitable for everyone, but you can ask your cancer specialist or speech and language therapist about using one. Oesophageal speech Sometimes, people choose to learn a technique called oesophageal speech. You can be taught this as you recover from your laryngectomy. Air is squeezed into the oesophagus (gullet) from the mouth. As the air moves up from the oesophagus, it vibrates and can be used to produce a voice. Movements of the lips, cheeks and tongue shape the sound into words. Oesophageal speech has the advantage of not needing any equipment. Some people find it easy to do but others find it more difficult. It’s usually best to practise little and often. A speech and language therapist can help you develop the best speech possible. They will also help you use your new way of talking for social situations and on the telephone. This technique is used less often nowadays. Treating laryngeal cancer 61 Electrolarynx There are different types of electronic aids available to help you produce a voice. You may be given one to use while you practise developing your new voice. You hold them next to your neck under the chin and they make sound vibrations that can be formed into speech. Your speech and language therapist will help you choose the type that suits you best. They’ll show you how to use it and look after it. Electronic keyboards Some people like to use electronic keyboards (like small typewriters) to communicate. Mini-laptops, tablets or text messaging on your mobile phone can also be good. There are different types of writing device available, too. Your speech and language therapist can tell you about these. ‘I now depend on my phone and tablet as a way of communication, for example texting, emails, and I have an app that will speak what you type in. I use this as my main way of talking now.’ Chris Having chemotherapy Treating laryngeal cancer 63 Chemotherapy Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. Cytotoxic means toxic to cells. These drugs disrupt the way cancer cells grow and divide but they also affect normal cells. The drugs travel around the bloodstream and can reach cancer cells anywhere in the body. Chemotherapy can be used to treat laryngeal cancer: •• at the same time as radiotherapy (chemoradiation) •• before radiotherapy to shrink larger tumours and make radiotherapy more effective •• to help to control the cancer and relieve symptoms (palliative chemotherapy). The chemotherapy drugs most commonly used to treat laryngeal cancer are: •• cisplatin •• 5-fluorouracil (also known as 5FU) •• docetaxel (Taxotere®). Other drugs that may be used include: •• carboplatin •• paclitaxel (Taxol®). We can send you more information about all of these chemotherapy drugs. Call us on 0808 808 00 00. 64 Understanding cancer of the voicebox (larynx) How chemotherapy is given A nurse will give you chemotherapy as an injection or as a drip (infusion) directly into a vein (intravenously). It can be given through a cannula (small tube) into the back of your hand or into your arm. The cannula is taken out straight after each treatment session has finished. It can also be given through a tube called a central line. This is a fine tube which goes into a vein in your chest. Or you may have a PICC line. This is a fine tube which goes into a vein in your arm and is threaded up into a vein in your upper chest. These lines can be put in as a day patient and stay in until you have finished all your treatment sessions. If you have a central or PICC line, you may have one of the chemotherapy drugs through a small pump that you can carry in a bag and take home with you. Your nurse will show you how to take care of the pump and how to look after your line when you are at home. While having chemotherapy, you may need to stay in hospital for a few days or you may be treated as a day patient. Chemotherapy is usually given as several sessions of treatment. Your doctors will explain how often you will have treatment. We can send you more information on central lines and PICC lines. Call us on 0808 808 00 00. Treating laryngeal cancer 65 Side effects Chemotherapy drugs may cause unpleasant side effects, but these can usually be well controlled with medicines and will usually go away once treatment has finished. Not all drugs cause the same side effects and some people may have very few. You can talk to your doctor or nurse about what to expect from the treatment that’s planned for you. The main side effects are described here as well as some ways to reduce or control them. We can send you further information about many of the side effects mentioned here. Risk of infection Chemotherapy can reduce your number of white blood cells, which help fight infection. If the number of white blood cells is low, you’ll be more prone to infections. A low white blood cell count is called neutropenia. Always contact the hospital immediately on the 24-hour contact number you’ve been given and speak to a nurse or doctor if: •• you develop a high temperature, which may be over 37.5°C (99.5°F) or over 38°C (100.4°F) depending on the hospital’s policy – follow the advice that you have been given by your chemotherapy team •• you suddenly feel unwell, even with a normal temperature •• you feel shivery and shaky •• you have any symptoms of an infection such as a cold, cough, passing urine frequently (urine infection) or diarrhoea. 66 Understanding cancer of the voicebox (larynx) If necessary, you’ll be given antibiotics to treat an infection. You’ll have a blood test before each cycle of chemotherapy to make sure your white blood cells have recovered. Occasionally, your treatment may need to be delayed if your number of white blood cells is still low. Anaemia (reduced number of red blood cells) Chemotherapy may reduce the number of red blood cells (haemoglobin) in your blood. A low level of red blood cells is known as anaemia, which can make you feel very tired and lethargic. You may also become breathless. Anaemia can be treated with blood transfusions. This should help you feel more energetic and ease the breathlessness. Bruising and bleeding Chemotherapy can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. If you develop any unexplained bruising or bleeding, such as nosebleeds, bleeding gums, blood spots or rashes on the skin, contact your doctor or the hospital straight away. Feeling sick Some chemotherapy drugs can make you feel sick (nauseated) or possibly be sick (vomit). Your cancer specialist will prescribe anti-sickness (anti-emetic) drugs to prevent this. Let your doctor or nurse know if your anti-sickness drugs are not helping, as there are several different types you can take. Tiredness (fatigue) You’re likely to become tired and have to take things more slowly. Try to pace yourself and save your energy for things that you want to do or that need doing. Balance rest with some physical activity – even going for short walks will help increase your energy levels. Treating laryngeal cancer 67 Sore mouth Your mouth may become sore and you may get ulcers. Look after your mouth by gently cleaning your teeth or dentures every morning and night and after meals. Use a soft-bristled or children’s toothbrush and make sure you drink plenty of fluids. Your nurse might ask you to rinse your mouth regularly or use mouthwashes. It’s important to follow any advice you are given. Tell your nurse or doctor if you have any problems. They can prescribe medicines to prevent or treat mouth infections and reduce any soreness. Loss of appetite Some people find that they lose their appetite during chemotherapy, especially if they are also having swallowing difficulties. Your doctor can arrange for you to see a dietitian, who will give you advice and may prescribe high-calorie drinks for you to have until your appetite comes back. Your doctor can arrange for a speech and language therapist to assess and advise you on any swallowing difficulties you may have. Our booklet Eating problems and cancer has some helpful hints on how to eat well when you are feeling ill. You can order a free copy at be.macmillan.org.uk Hair loss Some chemotherapy drugs may cause hair loss. Some people may have complete hair loss including eyelashes and eyebrows. Others may only experience partial hair loss or thinning. It depends on what chemotherapy drugs you are having (your doctor or nurse can tell you more about what to expect). If you do experience hair loss your hair should start to grow back within about 3 to 6 months of the end of treatment. It may grow back straighter, curlier, finer, or a slightly different colour than it was before. Your nurse can give you advice about coping with hair loss and how to look after your scalp. 68 Understanding cancer of the voicebox (larynx) Numbness or tingling in the hands or feet The chemotherapy drugs cisplatin and docetaxel can cause tingling or numbness, or a sensation of pins and needles. This is known as peripheral neuropathy. It’s important to let your doctor or nurse know if this happens. They may need to change the chemotherapy drug if it gets worse. Usually, peripheral neuropathy gradually gets better when chemotherapy is over, but sometimes it’s permanent. We can send you more information about peripheral neuropathy. Diarrhoea Some chemotherapy drugs can cause diarrhoea. This often starts several days after treatment. If you’re taking chemotherapy tablets or capsules at home, it’s important to let your doctor or nurse know if you have diarrhoea, as your treatment may need to be interrupted. Medicine can be prescribed to help. It’s important to drink plenty of fluids if you have diarrhoea. Sore hands and feet 5FU may cause redness or soreness of the palms of the hands or soles of the feet. This is known as palmar plantar erythema. It’s usually temporary and improves when the treatment is finished. Using unperfumed moisturising creams can often help with the symptoms. It can also help to keep your hands and feet cool and to avoid tight-fitting clothing such as socks, shoes and gloves. Your doctor may prescribe creams if needed. Our booklet Understanding chemotherapy discusses this treatment and its side effects in more detail. Call us on 0808 808 00 00 or visit be.macmillan.org.uk to order a free copy. Treating laryngeal cancer 69 Chemoradiation Certain chemotherapy drugs, such as cisplatin, may make radiotherapy work better. Chemotherapy given at the same time as radiotherapy is called chemoradiation. It can be given instead of surgery or after surgery to reduce the risk of the cancer coming back. However, giving the two treatments at the same time also increases the immediate side effects and risk of late effects (see pages 79–80). 70 Understanding cancer of the voicebox (larynx) Targeted therapies Targeted therapies work differently from chemotherapy. Each drug works in a different way, but they all treat cancer by affecting the way cancer cells grow or divide. A drug called cetuximab (Erbitux®) can be used to treat some people with cancer of the larynx. It’s given as a drip (infusion) into a vein. This type of targeted therapy is known as a monoclonal antibody. Cetuximab targets specific proteins (receptors) on the surface of the cancer cells, called epidermal growth factor receptors (EGFR). Cetuximab blocks the receptors, which prevents the cells from growing and dividing. It can also make cancer cells more sensitive to the effects of radiotherapy. It can be used to treat some people with laryngeal cancers that have started to spread. It is usually given with radiotherapy but can also be given with chemotherapy. Cetuximab may only be available in some situations. Your cancer doctor can tell you if it’s appropriate for you. If a drug isn’t available on the NHS, there may be different ways you are still able to have it. Your cancer doctor can give you advice. We have further information on what to do if a treatment isn’t available. Call us on 0808 808 00 00 or visit our website. Treating laryngeal cancer 71 Side effects The side effects of cetuximab are usually mild. Some people have flu-like symptoms such as a headache, fever, chills or dizziness when the infusion is being given. You’ll be given medication before the infusion to reduce the risk of this happening. The most common side effect is a skin rash. This can be a mild, acne-like rash, but some people may have a more severe skin reaction in the area where they have had their radiotherapy. You’ll be given advice on how to look after your skin while you’re having cetuximab. We can send you more information about cetuximab. Call us on 0808 808 00 00. 72 Understanding cancer of the voicebox (larynx) Research – clinical trials Cancer research trials are carried out to try to find new and better treatments for cancer. Trials that are carried out on patients are known as clinical trials. These may be carried out to: •• test new treatments, such as new chemotherapy drugs or targeted therapies •• look at new combinations of existing treatments, or change the way they are given to make them more effective or reduce side effects •• compare the effectiveness of drugs used to control symptoms •• find out how cancer treatments work •• find out which treatments are the most cost effective. Trials are the only reliable way to find out if a different type of surgery, chemotherapy, hormone therapy, radiotherapy or other treatment is better than what is already available. Taking part in a trial Trials help to improve knowledge about cancer and develop new treatments. You may be asked if you would like to take part in a treatment research trial. There can be benefits to doing this. You will be carefully monitored during and after the study. Usually, several hospitals around the country take part in these trials. It’s important to consider that some treatments that look promising at first are often later found not to be as good as existing treatments, or to have side effects that outweigh the benefits. Treating laryngeal cancer 73 If you decide not to take part in a trial, your decision will be respected and you don’t have to give a reason. However, it can help to let the staff know your concerns so that they can give you the best advice. There will be no change in the way that you’re treated by the hospital staff, and you’ll be offered the standard treatment for your situation. Blood and tumour samples Blood and tumour samples may be taken to help make the right diagnosis. You may be asked for your permission to use some of your samples for research into cancer. If you take part in a trial you may also give other samples, which may be frozen and stored for future use when new research techniques become available. Your name will be removed from the samples so you can’t be identified. The research may be carried out at the hospital where you are treated, or at another one. This type of research takes a long time, and results may not be available for many years. The samples will be used to increase knowledge about the causes of cancer and its treatment, which will hopefully improve the outlook for future patients. We have a booklet called Understanding cancer research trials (clinical trials). You can also visit our website, which has links to clinical trials databases at macmillan.org.uk/clinicaltrials ‘Twelve months on, I have rebuilt myself. I’ve learned to swallow and eat again, and took up running.’ Jacob After your treatment 75 After your treatment Follow-up76 After treatment 77 76 Understanding cancer of the voicebox (larynx) Follow-up Once your treatment has finished, you will have regular check-ups at the hospital. These will continue for several years. You may also have scans from time to time. It’s important you tell your specialist about any new symptoms you have or any symptoms that aren’t improving. Don’t wait until your next appointment to report any new symptoms. If you can’t attend a follow-up appointment, contact your doctor or clinic to arrange another one. For people whose treatment is over apart from regular check-ups, our booklet Life after cancer treatment gives useful information. Call us on 0808 808 00 00 or visit be.macmillan.org.uk to order a free copy. After your treatment 77 After treatment Making positive choices after treatment Coming to the end of your cancer treatment can be a time of mixed emotions. You’ll probably feel relieved, but there can also be feelings of anxiety and uncertainty. It can take time to rebuild your confidence and to come to terms with what you’ve been through. It may take time to recover from treatment. There may be physical changes in the way you look, and possibly changes in some areas of your daily life, such as the way you speak or what you can eat. There will also be emotional changes to deal with, so it’s important to give yourself time to adjust. You may want to think about making changes to your lifestyle and find out more about healthy living. Perhaps you followed a healthy lifestyle before your cancer and you’re keen to carry on making the most of your health. There are things you can do to help your body recover. These can also help improve your sense of well-being and lower your risk of getting other illnesses and cancers. The laryngectomy organisations listed at the back of this booklet can also provide support to help you adjust after treatment. Smoking If you’re a smoker, it’s important to try to give up. Smoking is the main cause of head and neck cancers. Stopping smoking reduces the risk of your cancer coming back and the risk of developing a second cancer. It also reduces the risk of other conditions, such as heart disease. Giving up smoking can be difficult, but there’s lots of support available. Speak to your doctor or specialist nurse, or call a stop-smoking helpline for further advice and to find out where your local stop-smoking service is (see page 108). 78 Understanding cancer of the voicebox (larynx) Alcohol Cutting back on alcohol is also important. If you can’t stop drinking alcohol completely, it’s best to avoid drinking spirits. Eating well It’s important to have a nutritious and well-balanced diet with plenty of fresh fruit and vegetables, even if your appetite and interest in food have been reduced. Eating small meals often can make eating easier. You may need to continue seeing a dietitian until you have reached a healthy weight and are able to eat a well-balanced diet without support. Your dietitian can advise you on ways to eat well and help with any problems you may have. They may prescribe high-calorie drinks to help you build up your diet. You may also need support from a speech and language therapist if you are having difficulty with swallowing. Physical activity This can be an important part of your recovery after treatment. It can help you feel better in yourself and help build up your energy levels. It also reduces the risk of heart disease, stroke and diabetes. Talk to your cancer specialist or GP before you start exercising. Start slowly and increase your activity over time. Exercise doesn’t have to be particularly strenuous. You can start gently and build up the amount of physical activity you do. Whatever your age or physical health, there will be some kind of exercise you could try, such as walking, hiking, cycling or swimming. Activities like gardening, dancing and playing sport are also good. You can read more about exercise and its benefits in our booklet Physical activity and cancer. After your treatment 79 Late effects of treatment Some side effects that develop during treatment can take time to improve. Sometimes side effects may become permanent. Other side effects may develop some time after treatment has finished (late effects). You may not experience any late effects, or they may range from being mild to more troublesome. Always let your doctor or specialist nurse know about any problems you have. There may be ways of treating or managing late effects if they happen. Problems swallowing This can be caused by thickening of the wall of the gullet (oesophagus), narrowing of the gullet, or loss of sensation when swallowing. A speech and language therapist can give you help and advice with swallowing problems. Dry mouth Radiotherapy can damage your salivary glands, leaving you with a dry mouth. This effect may be temporary, but sometimes can be permanent. Having a dry mouth can make eating difficult. You may need to carry water with you, or eat softer foods with plenty of sauces and gravies, which will be easier to swallow. Some people find having a humidifier by their bed at night can help keep the mouth and throat less dry. Some people keep a glass of water by the bed to sip if they wake up. You can use mouthwashes and protective gels to coat the lining of your mouth, which can help. Your cancer specialist or GP can prescribe these for you and you can talk to the staff at the radiotherapy outpatient department about ways to cope with a dry mouth. We can send you more information about coping with a dry mouth. Call us on 0808 808 00 00. 80 Understanding cancer of the voicebox (larynx) Dental problems If you have a dry mouth, you’re more at risk of problems with your teeth, as saliva protects your teeth from decay. It’s important to go for regular check-ups every 3 to 6 months with your dentist and oral hygienist and follow a regular daily mouth care routine to prevent tooth decay. Your dentist may prescribe fluoride products and will advise you on how to brush your teeth and keep your gums healthy. We have more information about mouth care and preventing tooth decay following treatment in our booklet Managing the late effects of head and neck cancer treatment. Low levels of the thyroid hormone, thyroxine (hypothyroidism) Surgery or radiotherapy treatment can affect the thyroid gland, which is near the larynx. The thyroid gland may produce less of the thyroid hormone, thyroxine. You will have blood tests to monitor your thyroid hormone levels. Symptoms of hypothyroidism include tiredness and weight gain. If you develop this condition, you will be given thyroxine tablets. Lymphoedema This is a collection of a fluid called lymph that causes swelling in the neck. It can develop when lymph nodes have been removed or damaged by surgery or radiotherapy. The earlier that lymphoedema is diagnosed, the easier it is to treat, so always let your doctor or nurse know if you have any swelling. They may refer you to a lymphoedema specialist. We have a booklet about lymphoedema, which you may find helpful if it affects you. You can order it at be.macmillan.org.uk After your treatment 81 Complementary therapies Complementary therapies may help you feel better and reduce any stress and anxiety. Relaxation, counselling and psychological support are available at many hospitals. Some hospitals also offer visualisation, massage, reflexology, aromatherapy and hypnotherapy. But it is important not to have massage directly over a tumour or lymph nodes (glands) affected by cancer. Therapies are sometimes available through cancer support groups or your GP. Many complementary therapists also have private practices. Not all complementary therapies are suitable for people who have just finished radiotherapy, so it’s important to check with your healthcare team first if you’re thinking of having one. Our booklet Cancer and complementary therapies tells you about different therapies and gives advice on choosing a therapist. ‘In general, I am continually moved by people’s response when I explain my whisper.’ Jacob Your feelings and relationships 83 Your feelings and relationships Your feelings 84 If you are a relative or friend 89 Relationships90 Talking to children 92 Who can help? 93 84 Understanding cancer of the voicebox (larynx) Your feelings It’s common to feel overwhelmed by different feelings when you’re told that you have cancer. We refer to some of these here. Partners, family and friends may also have some of the same feelings. Cancer of the larynx can affect people both emotionally and practically. If treatment has affected the way you breathe or speak, it can affect the way you feel about yourself and how you live your life. You might have different reactions to the ones we describe here. There is no right or wrong way to feel. You’ll cope with things in your own way. Talking to people close to you or other people affected by cancer can often help. Shock and disbelief You may find it hard to believe it when your doctor tells you that you have cancer. It’s common to feel shocked and numb. You may not be able to take in much information and find that you keep asking the same questions again and again. At first, you might find it hard to express yourself to family and friends about the cancer. This usually gets easier as the shock wears off and it becomes more real to you. You may find you can’t think or talk about anything but the cancer. This is because your mind is trying to process what you’re going through. Fear and anxiety People can be very anxious or frightened about whether treatment will work and what will happen in the future. This uncertainty can be one of the hardest things to cope with. It can help to try to focus on what you can control. Your feelings and relationships 85 You may want to find out more about the cancer, its treatment and how to manage side effects. It can also help to talk about your feelings and to take time to do things that are important to you and that you enjoy. Doctors often know roughly how many people can benefit from a type of treatment. But they can’t be sure what will happen to an individual person. Although they may not be able to answer your questions fully, they can usually talk through any problems with you and give you some guidance. Avoidance Some people cope by not wanting to know very much about the cancer and by not talking about it. If you feel like this, let your family and friends know that you don’t want to talk about it right now. You can also tell your doctor if there are things you don’t want to know or talk about yet. Occasionally, this avoidance can be extreme. Some people may not believe that they have cancer. This is sometimes called being in denial. It may stop them making decisions about treatment. If this happens, it’s very important for them to get help from their doctor. Sometimes, avoidance is the other way around. Family and friends may seem to avoid you and the fact that you have cancer. They may not want to talk about it or they might change the subject. This is usually because they are also finding the cancer difficult to cope with, and they may need support too. Try to let them know how this makes you feel and that talking openly with them about your illness will help you. 86 Understanding cancer of the voicebox (larynx) Anger You may feel angry about your illness and sometimes resent other people for being well. These are normal reactions, especially when you feel frightened, stressed, out of control or unwell. You may get angry with the people close to you. Let them know that you are angry at your illness and not at them. Finding ways to help you relax and reduce stress can help with anger. This can include talking about or writing down how you feel, gentle exercise, breathing or relaxation therapy, yoga or meditation. Guilt and blame Some people feel guilty or blame themselves or others for the cancer. You may try to find reasons for why it has happened to you. Most of the time, it’s impossible to know exactly what has caused a person’s cancer. Over time, several different factors may act together to cause a cancer. Doctors don’t fully understand all of these factors yet. Instead, try to focus on looking after yourself and getting the help and support you need. Feeling alone Some people feel alone because they don’t have enough support. Family and friends may live far away, have other commitments or feel uncomfortable because of their own fears about cancer. Try to let your family and friends know how you feel and how they could support you more. It’s normal to have times when you want to be left alone to sort out your feelings. But if you find you’re avoiding people a lot of the time, then try to talk to your doctor or nurse. Your feelings and relationships 87 If you need more support, you can call the Macmillan Support Line free on 0808 808 00 00 and talk to one of our cancer support specialists. You may find it helpful to write down how you feel and contact them via email. Or you may want to wait until your voice has adjusted after the treatment if you would like to speak to one of our cancer support specialists. Talking about your feelings Talking about your feelings can help reduce feelings of stress, anxiety and isolation. There are lots of different ways to do this. Try to let your family and friends know how you’re feeling so that they can support you. If you have a mobile phone or tablet, this might help you communicate if your voice is not strong enough. It’s possible to download programs that convert text to speech that will speak out what you type in. It is also possible to get a textphone landline. Your specialist nurse, speech and language therapist (SALT) or one of the laryngectomy organisations on page 107 might be able to advise you on what programs are most helpful. Support groups Self-help or support groups offer a chance to talk to other people who may be in a similar situation and facing the same challenges as you. Joining a group can be helpful if you live alone, or don’t feel able to talk about your feelings with the people around you. Not everyone finds talking in a group easy, especially if you are adjusting to new ways of communicating. Try going along to see what the group is like before you decide whether or not to take part. The National Association of Laryngectomee Clubs may be able to find a group local your area (see page 107). 88 Understanding cancer of the voicebox (larynx) You can call us on 0808 808 00 00 or visit macmillan.org.uk/ supportgroups for more information about groups across the UK. Online support Even though each person’s experience is very individual, some people find online support a useful way to ask questions and share experiences. You may find this a helpful way to communicate after your treatment if your voice has been affected. Our online community (macmillan.org.uk/community) is a social networking site where you can talk to people in our chat rooms, blog about your journey, make friends and join support groups. If you need more help These feelings can be very difficult to cope with and sometimes people need more help. This happens to lots of people and doesn’t mean you’re not coping. If you feel anxious, panicky or sad a lot of the time, or think you may be depressed, talk to your doctor or nurse. They can refer you to a doctor or counsellor who can help. They may also prescribe medicine to help with anxiety or an anti-depressant drug. Our booklet How are you feeling? The emotional effects of cancer discusses the feelings you may have in more detail, and has suggestions for coping with them. Your feelings and relationships 89 If you are a relative or friend Some people find it hard to talk about cancer or share their feelings. You might think it’s best to pretend everything is fine, and carry on as normal. You might not want to worry the person with cancer, or you might feel you’re letting them down if you admit to being afraid. Denying strong emotions can often make it even harder to talk, and may lead to the person with cancer feeling very isolated. Partners, relatives and friends can help by listening carefully to what the person with cancer wants to say. It may be best not to rush into talking about the illness. Often it’s enough just to listen and let the person with cancer talk when they are ready. You may find some of the courses on our Learn Zone website helpful. There are courses to help with listening and talking, to help friends and family support their loved ones affected by cancer. Visit macmillan.org.uk/learnzone to find out more. Our booklet Talking with someone who has cancer has more suggestions if you have a friend or relative with cancer. If you’re looking after a family member or friend with cancer, you may find our booklet Looking after someone with cancer helpful. It’s based on carers’ experiences and has lots of practical tips and information. We also have more information about supporting someone with cancer at macmillan.org.uk/carers 90 Understanding cancer of the voicebox (larynx) Relationships The experience of cancer may have improved your relationships with people close to you. The support of family and friends may have helped you cope. But cancer is stressful, and this can have an effect on relationships. Any problems usually improve over time, especially if you can communicate openly about them. ‘I have adjusted to my new voice level and in close proximity can enjoy excellent communication. Loud environments, especially kids’ parties, can be very challenging, but family and friends are most understanding.’ Jacob Your partner Some couples become closer through a cancer experience. However, cancer can put a lot of strain on a relationship. Problems sometimes develop, even between couples who’ve been together for a long time. If a relationship was already difficult, the stress of a major illness may make things worse. This can be made even harder if you are having problems communicating. Even couples that are close may not always know how their partner is feeling. Finding a way to communicate openly about your feelings and listening to each other can help you understand each other. This may mean writing down how you feel if your voice is in the process of adjusting. Your feelings and relationships 91 Our booklets Cancer, you and your partner, Sexuality and cancer – information for men and Sexuality and cancer – information for women have more information that may help. Family and friends Your family and friends may not always understand if you aren’t feeling positive about getting on with things, and may not know how big an effect treatment is having on your life. Talking about how you feel will help them give you the support you need. Our booklet Talking about your cancer has more useful tips and can give you ideas about how to express yourself. 92 Understanding cancer of the voicebox (larynx) Talking to children Deciding what to tell your children or grandchildren about your cancer is difficult. An open, honest approach is usually best. Even very young children can sense when something is wrong, and their fears can sometimes be worse than the reality. How much you tell your children will depend on their age and how mature they are. It may be best to start by giving only small amounts of information and gradually tell them more to build up a picture of your illness. Teenagers Teenagers can have an especially hard time. At a stage when they want more freedom, they may be asked to take on new responsibilities and they may feel over-burdened. It’s important that they can go on with their normal lives as much as possible and still get the support they need. If they find it hard to talk to you, you could encourage them to talk to someone close who can support and listen to them, such as a grandparent, family friend, teacher or counsellor. They may also find it useful to look at the website riprap.org.uk, which has been developed especially for teenagers who have a parent with cancer. Our booklet Talking to children and teenagers when an adult has cancer includes discussion about sensitive topics. There’s also a video on our website that may help, at macmillan.org.uk/talkingtochildren Your feelings and relationships 93 Who can help? There are people available to help you and your family. District nurses work closely with GPs and make regular visits to patients and their families at home if needed. The hospital social worker can give you information about social services and benefits you may be able to claim, such as meals on wheels, a home helper or hospital fares. The social worker may also be able to arrange childcare for you during and after treatment. In many areas of the country, there are also specialist nurses called palliative care nurses. They are experienced in assessing and treating the symptoms of advanced cancer. Palliative care nurses are sometimes known as Macmillan nurses. However, many Macmillan professionals are nurses who have specialist knowledge in a particular type of cancer. You may meet them when you’re at a clinic or in hospital. Marie Curie nurses help care for people approaching the end of their lives in their own homes. Your GP or hospital specialist nurse can usually arrange a visit by a palliative care or Marie Curie nurse. There’s also specialist help available to help you cope with the emotional impact of cancer and its treatment. You can ask your hospital doctor or GP to refer you to a doctor or counsellor who specialises in supporting people with cancer and their families. Our cancer support specialists on 0808 808 00 00 can tell you more about counselling and can let you know about services in your area. Work and financial support 95 Work and financial support Financial help and benefits 96 Insurance98 Work99 96 Understanding cancer of the voicebox (larynx) Financial help and benefits If you are struggling to cope with the financial effects of cancer, help is available. If you cannot work because you are ill, you may be able to get Statutory Sick Pay. Your employer will pay this for up to 28 weeks of sickness. If you qualify for it, they cannot pay you less. Before your Statutory Sick Pay ends, or if you do not qualify for it, check whether you can get Employment and Support Allowance (ESA). This benefit is for people who cannot work because they are ill or disabled. There are two different types of ESA: •• contributory – you can get this if you have made enough national insurance contributions •• income-related – you can get this if your income and savings are below a certain level. From October 2013, a new benefit called Universal Credit is replacing income-related ESA. This is for people who are looking for work or who are on a low income. Personal Independence Payment (PIP) is a new benefit for people under 65 who find it difficult to walk or look after themselves (or both). You must have had these difficulties for at least three months, and they should be expected to last for the next nine months. Since April 2013, PIP has started to replace a similar older benefit called Disability Living Allowance. Attendance Allowance (AA) is for people aged 65 or over who find it difficult to look after themselves. You may qualify if you need help with things like getting out of bed, having a bath or dressing yourself. You don’t need to have a carer, but you must have needed care for at least six months. Work and financial support 97 If you are terminally ill, you can apply for PIP, DLA or AA under the ‘special rules’. This means your claim will be dealt with quickly and you will get the benefit you applied for at the highest rate. Help for carers Carers Allowance is a weekly benefit that helps people who look after someone with a lot of care needs. If you don’t qualify for it, you can apply for Carer’s Credit. This helps you to build up qualifying years for a State Pension. More information The benefits system can be hard to understand, so it’s a good idea to talk to an experienced welfare rights adviser. You can speak to one by calling the Macmillan Support Line on 0808 808 00 00. We’ve just listed some benefits here, but there may be others you can get. You can find out about state benefits and apply for them online at gov.uk (England, Wales and Scotland) and nidirect.gov. uk (Northern Ireland). These websites have information about financial support, your rights, employment and independent living. You can also get information from the relevant Department for Work and Pensions helplines (see page 111) or Citizens Advice (see pages 110–111). In Northern Ireland, you can call the Benefit Enquiry Line Northern Ireland on 0800 220 674. Our booklet Help with the cost of cancer has more detailed information. You might also find our video at macmillan.org.uk/gettingfinancialhelp useful. 98 Understanding cancer of the voicebox (larynx) Insurance People who have, or have had, cancer may find it hard to get certain types of insurance, including life and travel insurance. A financial adviser can help you look at your needs and find the best deal for you. You can find a financial adviser by contacting one of the organisations on pages 110–111. Our booklets Insurance and Getting travel insurance may also be helpful. You can order free copies at be.macmillan.org.uk Work and financial support 99 Work You may need to take time off work during your treatment and for a while afterwards. It can be hard to judge the best time to go back to work, and this will depend mainly on the type of work you do and how much your income is affected. It’s important to do what’s right for you. Getting back into your normal routine can be very helpful, and you may want to go back to work as soon as possible. It can be helpful to talk to your employer about the situation – it may be possible for you to work part-time or job share. On the other hand, it can take a long time to recover fully from cancer treatment, and it may be many months before you feel ready to return to work. It’s important not to take on too much, too soon. Your consultant, GP or specialist nurse can help you decide when and if you should go back to work. Employment rights The Equality Act 2010 protects anyone who has, or has had, cancer. Even if a person who had cancer in the past has been successfully treated and is now cured, they are still covered by the act. This means their employer must not discriminate against them for any reason, including their past cancer. The Disability Discrimination Act protects people in Northern Ireland. Our booklets Work and cancer, Working while caring for someone with cancer and Self-employment and cancer have more information that may be helpful. There’s also more information at macmillan.org.uk/work Further information 101 Further information About our information 102 Other ways we can help you 104 Other useful organisations 107 Your notes and questions 113 102 Understanding cancer of the voicebox (larynx) About our information We provide expert, up-to-date information about cancer. And all our information is free for everyone. Order what you need Other formats You may want to order more We also provide information leaflets or booklets like this one. in different languages and Visit be.macmillan.org.uk or formats, including: call us on 0808 808 00 00. •• audiobooks We have booklets on different cancer types, treatments and side effects. We also have information about work, financial issues, diet, life after cancer and information for carers, family and friends. All of our information is also available online at macmillan. org.uk/cancerinformation There you’ll also find videos featuring real-life stories from people affected by cancer, and information from health and social care professionals. •• Braille •• British Sign Language •• Easy Read booklets •• ebooks •• large print •• translations. Find out more at macmillan. org.uk/otherformats If you’d like us to produce information in a different format for you, email us at cancerinformationteam@ macmillan.org.uk or call us on 0808 808 00 00. Further information 103 Help us improve our information We know that the people who use our information are the real experts. That’s why we always involve them in our work. If you’ve been affected by cancer, you can help us improve our information. We give you the chance to comment on a variety of information including booklets, leaflets and fact sheets. If you’d like to hear more about becoming a reviewer, email reviewing@macmillan. org.uk You can get involved from home whenever you like, and we don’t ask for any special skills – just an interest in our cancer information. 104 Understanding cancer of the voicebox (larynx) Other ways we can help you At Macmillan, we know how a cancer diagnosis can affect everything, and we’re here to support you. No one should face cancer alone. Talk to us If you or someone you know is affected by cancer, talking about how you feel and sharing your concerns can really help. Macmillan Support Line Our free, confidential phone line is open Monday–Friday, 9am–8pm. Our cancer support specialists can: •• help with any medical questions you have about your cancer or treatment •• help you access benefits and give you financial guidance •• be there to listen if you need someone to talk to •• tell you about services that can help you in your area. Call us on 0808 808 00 00 or email us via our website, macmillan.org.uk/talktous Information centres Our information and support centres are based in hospitals, libraries and mobile centres. There, you can speak with someone face to face. Visit one to get the information you need, or if you’d like a private chat, most centres have a room where you can speak with someone alone and in confidence. Find your nearest centre at macmillan.org.uk/ informationcentres or call us on 0808 808 00 00. Further information 105 Talk to others Online community Thousands of people use our No one knows more about the online community to make impact cancer can have on your friends, blog about their life than those who have been experiences and join groups through it themselves. That’s to meet other people going why we help to bring people through the same things. together in their communities You can access it any time and online. of day or night. Share your experiences, ask questions, Support groups or just read through people’s Whether you are someone posts at macmillan.org.uk/ living with cancer or a carer, community we can help you find support The Macmillan in your local area, so you healthcare team can speak face to face with people who understand. Our nurses, doctors and Find out about support groups other health and social care in your area by calling us or professionals give expert care by visiting macmillan.org.uk/ and support to individuals and selfhelpandsupport their families. Call us or ask your GP, consultant, district nurse or hospital ward sister if there are any Macmillan professionals near you. ‘Everyone is so supportive on the online community, they know exactly what you’re going through. It can be fun too. It’s not all just chats about cancer.’ Mal 106 Understanding cancer of the voicebox (larynx) Help with money worries Having cancer can bring extra costs such as hospital parking, travel fares and higher heating bills. If you’ve been affected in this way, we can help. Financial guidance Our financial team can give you guidance on mortgages, pensions, insurance, borrowing and savings. Help accessing benefits Our benefits advisers can offer advice and information on benefits, tax credits, grants and loans. They can help you work out what financial help you could be entitled to. They can also help you complete your forms and apply for benefits. Macmillan Grants Macmillan offers one-off payments to people with cancer. A grant can be for anything from heating bills or extra clothing to a much-needed break. Call us on 0808 808 00 00 to speak to a financial guide or benefits adviser, or to find out more about Macmillan Grants. We can also tell you about benefits advisers in your area. Visit macmillan.org.uk/ financialsupport to find out more about how we can help you with your finances. Help with work and cancer Whether you’re an employee, a carer, an employer or are self-employed, we can provide support and information to help you manage cancer at work. Visit macmillan.org.uk/work Macmillan’s My Organiser app This free mobile app can help you manage your treatment, from appointment times and contact details, to reminders for when to take your medication. Search ‘My Organiser’ on the Apple App Store or Google Play on your phone. Further information 107 Other useful organisations There are lots of other organisations that can give you information or support. Laryngeal cancer support organisations Cancer Laryngectomee Trust PO Box 618, Halifax HX3 8WX Tel 01422 205 522 Email [email protected] www.cancerlt.org Provides support to people who are about to have, or have had, a laryngectomy. They can send you a free copy of the book Laryngectomy is not a tragedy, suitable for patients, their families and healthcare professionals. Changing Faces The Squire Centre, 33–37 University Street, London WC1E 6JN Tel 0300 0120 275 Email [email protected] www.changingfaces.org.uk Offers information, advice and support to people living with a changed appearance or disfigurement. Can also refer people for skin camouflage. This service is run by specially trained volunteers, who can teach people how to self-apply specialist cover creams. National Association of Laryngectomee Clubs Suite 16, Tempo House, 15 Falcon Road, London SW11 2PJ Tel 020 7730 8585 (Mon–Fri, 9am–4pm) www.laryngectomy.org.uk Aims to promote the welfare of people who have had a laryngectomy, and their families. Produces videos, DVDs and a range of booklets, including a handbook for people who have had a laryngectomy. Supports 100 local clubs and can arrange hospital visits before and after your operation. 108 Understanding cancer of the voicebox (larynx) Support to stop smoking NHS Smoking Helpline (Mon–Fri, 9am–8pm, Sat–Sun, 11am–5pm) England 0300 123 1044 Scotland 0800 84 84 84 Wales 0800 085 2219 Northern Ireland 0800 85 85 85 www.nhs.uk/smokefree This phone service and the Smokefree website offer free information, advice and support to people who are giving up smoking, and those who have given up smoking and do not want to start again. NHS Asian Tobacco Helpline (Mon–Fri, 9am–8pm, Sat–Sun, 11am–5pm) Urdu 0800 169 0881 Punjabi 0800 169 0882 Hindi 0800 169 0883 Gujarati 0800 169 0884 Bengali 0800 169 0885 General cancer support organisations Cancer Black Care 79 Acton Lane, London NW10 8UT Tel 020 8961 4151 Email [email protected] www.cancerblackcare.org.uk Offers information and support for people with cancer from ethnic communities, and their families, carers and friends. Cancer Focus Northern Ireland 40–44 Eglantine Avenue, Belfast BT9 6DX Helpline 0800 783 3339 (Mon–Fri, 9am–1pm) Email [email protected] www.cancerfocusni.org Offers a variety of services to people affected by cancer, including a free helpline, counselling and links to local support groups. Further information 109 Cancer Support Scotland The Calman Centre, 75 Shelley Road, Glasgow G12 0ZE Tel 0800 652 4531 Email info@ cancersupportscotland.org www.cancersupport scotland.org Runs cancer support groups throughout Scotland. Also offers free complementary therapies and counselling to anyone affected by cancer. Irish Cancer Society 43–45 Northumberland Road, Dublin 4, Ireland Tel 1800 200 700 (Mon–Thu, 9am–7pm, Fri, 9am–5pm) Email [email protected] www.cancer.ie National cancer charity offering information, support and care to people affected by cancer. Has a helpline staffed by specialist cancer nurses. Maggie’s Centres The Gatehouse, 10 Dumbarton Road, Glasgow G11 6PA Tel 0300 123 1801 Email enquiries@ maggiescentres.org www.maggiescentres.org Provides information about cancer, benefits advice, and emotional or psychological support. Tenovus Head Office, Gleider House, Ty Glas Road, Cardiff CF14 5BD Helpline 0808 808 1010 (Mon–Sun, 8am–8pm) Email info@ tenovuscancercare.org.uk www.tenovus.org.uk Aims to help everyone get equal access to cancer treatment and support. Funds research and provides support such as mobile cancer support units, a free helpline, an ‘Ask the nurse’ service on the website and benefits advice. 110 Understanding cancer of the voicebox (larynx) Counselling and emotional support British Association for Counselling and Psychotherapy (BACP) BACP House, 15 St John’s Business Park, Lutterworth, Leicestershire LE17 4HB Tel 01455 883 300 Email [email protected] www.bacp.co.uk Promotes awareness of counselling and signposts people to appropriate services. You can search for a qualified counsellor at itsgoodtotalk.org.uk Equipment and advice on living with disability Assist UK Redbank House, 4 St Chad’s Street, Manchester M8 8QA Tel 0161 832 9757 Email [email protected] www.assist-uk.org A UK-wide network of Disabled Living Centres. Staff can give advice about the products, which are designed to make life easier for people who have difficulty with daily activities. British Red Cross UK Office, 44 Moorfields, London EC2Y 9AL Tel 0344 871 11 11 Email [email protected] www.redcross.org.uk Offers a range of health and social care services, such as care in the home, a medical equipment loan service and a transport service. Financial or legal advice and information Benefit Enquiry Line Northern Ireland Helpline 0800 220 674 (Mon–Wed and Fri, 9am–5pm, Thu, 10am–5pm) Textphone 028 9031 1092 www.nidirect.gov.uk/ money-tax-and-benefits Provides information and advice about disability benefits and carers’ benefits. Citizens Advice Provides advice on a variety of issues including financial, legal, housing and employment issues. Find details for your local office in the phone book or on one of these websites: Further information 111 England and Wales www.citizensadvice.org.uk Scotland www.cas.org.uk Northern Ireland www.citizensadvice.co.uk You can also find advice online in a range of languages at www.citizensadvice.org.uk/ resources-and-tools/ languages Department for Work and Pensions (DWP) Personal Independence Payment Helpline 0345 850 3322 Textphone 0345 601 6677 Carer’s Allowance Unit 0345 608 4321 Textphone 0345 604 5312 www.gov.uk/ browse/benefits Manages state benefits in England, Scotland and Wales. You can apply for benefits and find information online or through its helplines. GOV.UK www.gov.uk Has information about social security benefits and public services in England, Scotland and Wales. Support for carers Carers Trust Email [email protected] www.carers.org Provides support, information, advice and services for people caring at home for a family member or friend. You can find details for UK offices and search for local support on the website. Carers UK Helpline (England, Scotland, Wales) 0808 808 7777 (Mon–Fri, 10am–4pm) Tel (Northern Ireland) 028 9043 9843 Email [email protected] www.carersuk.org Offers information and support to carers across the UK. Can put people in contact with support groups for carers in their area. 112 Understanding cancer of the voicebox (larynx) Support for older people Age UK Tavis House, 1–6 Tavistock Square, London WC1H 9NA Helpline (England and Wales) 0800 169 2081 Helpline (Scotland) 0800 470 8090 Helpline (Northern Ireland) 0808 808 7575 (Daily, 8am–7pm) www.ageuk.org.uk Provides information and advice for older people across the UK via the website and advice line. Also publishes impartial and informative fact sheets and advice guides. You can search for more organisations on our website at macmillan.org.uk/organisations or call us on 0808 808 00 00. Your notes and questions 114 Understanding cancer of the voicebox (larynx) Disclaimer We make every effort to ensure that the information we provide is accurate and up-to-date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it. Some photos are of models. Thanks This booklet has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by Dr Chris Alcock, Consultant Clinical Oncologist and Macmillan Chief Medical Editor. With thanks to: Dr Matthew Beasley, Consultant Clinical Oncologist; Daphne Carpenter, Macmillan Speech and Language Therapist; Debbie Elliott, Head and Neck/Thyroid Clinical Nurse Specialist; Mr Churunal Hari, Consultant ENT Head and Neck Surgeon; Julia Pockett, Macmillan Speech and Language Specialist; the people affected by cancer who reviewed this edition; and those who shared their stories. Sources We’ve listed a sample of the sources used in this booklet below. If you’d like further information about the sources we use, email us at bookletfeedback@ macmillan.org.uk British Association of Head and Neck Oncologists (BAHNO). BAHNO standards 2009. Ear, Nose and Throat (ENT) UK. Head and neck cancer: multidisciplinary management guidelines. 4th edition. 2011. HSCIC (Health and Social Care Information Centre). National head and neck cancer audit 2014. National Institute for Health and Care Excellence (NICE). Improving outcomes in head and neck cancers: evidence update. May 2012. Society of Radiographers. Skin care advice for patients undergoing radical external beam megavoltage radiotherapy. February 2015. Squamous cell carcinoma of the head and neck: EHNS-ESMO-ESTRO clinical practice guidelines 2010. Tobias J, Hochhauser D. Cancer and its management. 2010. Wiley-Blackwell. Can you do something to help? We hope this booklet has been useful to you. It’s just one of our many publications that are available free to anyone affected by cancer. They’re produced by our cancer information specialists who, along with our nurses, benefits advisers, campaigners and volunteers, are part of the Macmillan team. When people are facing the toughest fight of their lives, we’re there to support them every step of the way. We want to make sure no one has to go through cancer alone, so we need more people to help us. When the time is right for you, here are some ways in which you can become a part of our team. 5 ways you can someone hElP with cAncer Share your cancer experience Support people living with cancer by telling your story, online, in the media or face to face. Campaign for change We need your help to make sure everyone gets the right support. Take an action, big or small, for better cancer care. Help someone in your community A lift to an appointment. Help with the shopping. Or just a cup of tea and a chat. Could you lend a hand? Raise money Whatever you like doing you can raise money to help. Take part in one of our events or create your own. Give money Big or small, every penny helps. To make a one-off donation see over. Call us to find out more 0300 1000 200 macmillan.org.uk/getinvolved Please fill in your personal details Don’t let the taxman keep your money Mr/Mrs/Miss/Other Do you pay tax? If so, your gift will be worth 25% more to us – at no extra cost to you. All you have to do is tick the box below, and the tax office will give 25p for every pound you give. Name Surname Address Postcode Phone Email Please accept my gift of £ (Please delete as appropriate) I enclose a cheque / postal order / Charity Voucher made payable to Macmillan Cancer Support OR debit my: Visa / MasterCard / CAF Charity Card / Switch / Maestro Card number Valid from Expiry date Issue no Security number I am a UK tax payer and I would like Macmillan Cancer Support to treat all donations I make or have made to Macmillan Cancer Support in the last 4 years as Gift Aid donations, until I notify you otherwise. I understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in that tax year it is my responsibility to pay any difference. I understand Macmillan Cancer Support will reclaim 25p of tax on every £1 that I give. Macmillan Cancer Support and our trading companies would like to hold your details in order to contact you about our fundraising, campaigning and services for people affected by cancer. If you would prefer us not to use your details in this way please tick this box. In order to carry out our work we may need to pass your details to agents or partners who act on our behalf. Signature Date / / If you’d rather donate online go to macmillan.org.uk/donate # Please cut out this form and return it in an envelope (no stamp required) to: Supporter Donations, Macmillan Cancer Support, FREEPOST LON15851, 89 Albert Embankment, London SE1 7UQ 27530 More than one in three of us will get cancer. For most of us it will be the toughest fight we ever face. And the feelings of isolation and loneliness that so many people experience make it even harder. But you don’t have to go through it alone. The Macmillan team is with you every step of the way. We are the nurses and therapists helping you through treatment. The experts on the end of the phone. The advisers telling you which benefits you’re entitled to. The volunteers giving you a hand with the everyday things. The campaigners improving cancer care. The community there for you online, any time. The supporters who make it all possible. Together, we are all Macmillan Cancer Support. For cancer support every step of the way, call Macmillan on 0808 808 00 00 (Mon–Fri, 9am–8pm) or visit macmillan.org.uk Hard of hearing? Use textphone 0808 808 0121, or Text Relay. Non-English speaker? Interpreters available. Braille and large print versions on request. © Macmillan Cancer Support, June 2016. 10th edition. MAC11650. Next planned review 2018. Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Printed using sustainable material. Please recycle.