Radiotherapy to the head and neck region
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1 Radiotherapy to the head and neck region The Sussex Cancer Centre Information for patients
2 This leaflet is for patients attending The Sussex Cancer Centre for radiotherapy treatment to the head and neck region. It describes the radiotherapy planning and treatment and explains the side effects you may experience and how best to cope with them. We understand that you and your family may feel anxious at this time and hope that this leaflet will help to answer some of your questions. You will have an opportunity to discuss your treatment and any side effects with the consultant oncologist and the specialist head and neck radiographer, your keyworker, throughout this time. The treatment and its effects vary for each patient therefore the information in this leaflet is meant as a general guide. You will meet other members of the team who are there to support you through the treatment; the specialist nurse, the specialist dietitian and some patients may also require the support of the speech and language therapist. Smoking If you smoke we advise you to stop. Smoking worsens the side effects of treatment. If you are finding it difficult but would like to stop please speak to us. We can refer you to the smoking cessation clinic where you will be given help and advice. Alternately please speak to your GP or call the government helpline on Alcohol We advice you to restrict your alcohol intake during treatment. Moderate amounts of beer or wine are not harmful but we advise you not to drink spirits as this often causes pain. During treatment most patients temporarily lose their taste for alcohol. Dental Care If you have your own teeth you may require a dental x-ray and a check up before you start treatment. Occasionally patients need to have teeth extracted. 2
3 Preparation for radiotherapy Before you start your radiotherapy you will have an immobilisation mask made in the Mould Room which you will wear during treatment. It will keep your head still and enable the radiographers to treat you accurately each day. The mould room is in the Sussex Cancer Centre. The mask is tight fitting but is also lightweight; you are able to see and hear through it. We will make marks on the mask not on your face, however we will make one small permanent tattoo mark on your chest. CT Plan Scan Planning normally takes place on the same day as you have your mask made. We will start to plan your treatment in the CT plan scanner which is also in the Sussex Cancer Centre. Images and measurements of you will be taken while you are wearing the mask. These will then be used by the consultant oncologist to plan your treatment. Before your treatment starts, you will meet the treatment radiographers who check all the measurements on the treatment linear accelerator on which you will be treated. For these appointments you are required to lie still for between 15 and 20 minutes. If you are taking any medication, particularly for pain, please bring them with you to the hospital. Please let us know if you suffer from claustrophobia. General advice during radiotherapy Transport Hospital transport is only available in particular cases where a patient is medically unfit to travel to the Sussex Cancer Centre by any other means. If you are on benefits or pension credit the hospital may pay for your travel costs. We will discuss this with you. 3
4 Help It is important that you let us know how you feel so that we can help you. Accept help from family and friends, it allows them to feel involved and show that they care for you. Emotional If you are struggling emotionally we will do what we can to support you and can refer you to the psychological support team. Tiredness Treatment especially when it includes chemotherapy will make you feel tired; you may also have a long journey so get plenty of rest and sleep. Tiredness may continue for many weeks after treatment is finished. This is normal. Lifestyle Try to maintain your normal lifestyle for as long as possible. This will help you cope emotionally. Complimentary Therapies These are available in the department, if you would like to have a massage, Indian head massage or reflexology please ask at the front reception desk and they will make an appointment for you. Finance If having cancer and treatment are a causing a financial burden please speak to your keyworker who will offer help and advise. All prescriptions are free for cancer patients. If you do not have an exemption card,please ask and we will give you a form. The Macmillan benefits helpline telephone number is on the back page. Radiotherapy treatment Your treatment will be given on an x-ray machine called a Linear Accelerator (L.A.). Radiotherapy is given every weekday in The Sussex Cancer Centre. Normally you will not have treatment at the weekend, however occasionally patients will have two 4
5 treatments on the same day and you may be treated on bank holidays. A course of treatment will last between four and eight weeks. As each treatment is planned on an individual basis the length of each treatment and the number of treatments will vary between patients. Please report to radiotherapy reception when you arrive each day. On the first day the treatment radiographers will have a chat with you and answer any questions which you may have. In the treatment room you will be asked to lie on the couch and while wearing the mask; the radiographers will help you into the correct position. The room lights are dimmed and a laser will be used to help position you. When the radiographers are happy that you are in the correct position the lights will be put back on and they will then leave the room and deliver the treatment. The radiographers may enter and leave the room a few times during treatment. Although you are alone while you are having your treatment it only takes a few minutes at a time and the radiographers can see and hear you at all times. You should stay still during the treatment and breathe normally. If you feel anxious raise your arm and someone will attend to you. The radiographers will come in and out of the room a few times while adjusting the machine. You will hear a humming noise from the machine which is normal. Music can be played during the treatment and you can make a request for a specific piece of music. Radiotherapy is painless and does not make you radioactive. Side effects of treatment Although you cannot see or feel radiotherapy it has many side effects, most of which are temporary but some are long term and permanent. Most patients will suffer some but not all of these as they will vary from patient to patient depending on the area which is being treated. Your consultant oncologist will have discussed all of these with you before you started treatment but if you are unsure please ask. 5
6 Temporary or acute radiation side effects will be felt after approximately 10 treatments and last for approximately six weeks after treatment has finished. To help you manage these side effects you will be seen weekly by the specialist radiographer and specialist nurse in the on treatment review clinic. They will advise you and give you medication as you need it. If you have particular problems they will see you more often or refer you to the doctor. Long term or permanent side effects of radiation The consultant oncologist will spend a long time planning your treatment in order to treat all the areas which need to be treated while doing the least damage to the surrounding tissues. You will always be more sensitive to the sun in the area which has been treated and you should use total sun block. Most patients will need to pay special attention to their teeth for the rest of their lives as you will be at a higher risk of tooth decay. Visit the dentist regularly, always use fluoride toothpaste, brush your teeth after each meal. If you chew gum or suck sweets make sure that they are sugar free. Some patients will have altered saliva, it may be thicker or you may have a dry mouth. If this is the case we will discuss this with you and suggest ways of coping. Some hair loss will be permanent. A very rare side of radiotherapy is that it can cause another tumour many decades later. Skin care Radiation affects only the skin in the area where the radiation enters and leaves the body. This area is different for each patient, the treatment radiographer will be able to tell you exactly where you are being treated. Your skin will become dry and red from the treatment and may break down. This is temporary and your skin will recover quite quickly after treatment. We have a skin care clinic which we will refer you to when necessary. 6
7 To minimise the effects please follow these instructions: Men should use an electric shaver. If you do not have one and buying one is a problem please speak to your keyworker. No aftershave, perfume or make up should be used in the area being treated. Use Aqueous cream or E45 liberally in the area to keep the skin well moisturised. Do this at least twice each day. Only use creams that we suggest as any others may worsen the radiation reaction. Avoid friction around the neck by avoiding tight clothes or collar. You may find that a silk scarf around your neck is comfortable. Do not swim at this time as the chlorine will cause pain in the treatment area. Avoid exposing this area to the sun or strong wind. Stay in the shade as much as possible and wear a hat with a large brim or a loose scarf around your neck. Do not apply suntan lotion while you are having treatment. Hot water bottles or heat pads should not be placed on the skin which is in the treatment area. Hair loss You will lose hair where the beam enters and leaves your body. As this will be different for each patient we will discuss this with you. Some loss may be permanent. Mouth and throat As you skin becomes sore on the outside then your mouth and throat will become painful on the inside. You may get sore cracked lips, bleeding gums, sore mouth and tongue. Some other common side effects are dry mouth (Xerostomia); ulceration; taste changes; and oral thrush and thick ropey saliva. Remember each person is different so you may not get all of these side effects. Your side effects which change from week to week so 7
8 a member of the head and neck team will see you regularly to help you cope by giving you different mouthwashes and painkillers. The symptoms should clear up within four - six weeks of treatment ending. Detailed advice on caring for your mouth is in the leaflet Caring for your mouth during Radiotherapy. If you do not have this leaflet please ask for a copy. Diet You should maintain a healthy balanced diet, as far as possible. Drink plenty of fluids especially water throughout the day unless your doctor has instructed otherwise. You may find that a diet of soft food is easier at this time. If you have any problems with eating and or swallowing, the specialist dietitian will help you with advice on how to prepare your food, what to eat and how to supplement your diet. If we know a patient will have problems swallowing we sometimes place a feeding tube directly to their stomach. If this is necessary the procedure will be discussed with you in great detail and you will be given all the support that you will need. Weight loss Most patients lose some weight during treatment. We will weigh you regularly and ensure that you do not lose too much. Taste changes Many patients have taste changes which can be due to both radiotherapy and chemotherapy. These changes can be erratic. Normal taste returns at different times for different patients but this is normally within 6-12 weeks of the end of treatment. 8
9 Constipation Please let us know if you are constipated, although this is common during treatment because of the change in diet and the medication it is not desirable and can become serious. We can help you resolve the problem. Speech and swallowing difficulties (Dysphagia) Difficulties with swallowing may be due to your cancer, surgery or temporarily as a side effect of treatment. If this is the case you will be seen by the specialist speech and language therapist who will help you manage by giving you advice and exercises. Your voice Your voice may change during treatment becoming weaker and or hoarse or uncomfortable because it feels dry. Try to avoid speaking on the telephone and shouting. Rest your voice as much as you can and avoid smoking and smoky atmospheres. We may arrange for you to use a nebuliser before treatment each day. The speech and language therapist will help you. If you have had a tracheotomy or a laryngectomy you will know the speech and language therapist from your time on the ward. When your treatment is finished Before you complete your radiotherapy you will be give a letter informing you of the details of your follow up appointment. Follow Up appointment Between four and six weeks after treatment is finished you will be seen in the joint head and neck clinic. This clinic takes place on Wednesday morning and is called the joint clinic because all the members of the multidisciplinary team attend. You will see both your surgeon and oncologist and your keyworker at this appointment. 9
10 The team will not see you until four to six weeks after treatment has finished. You need this time to recover from treatment and its side effects. During these weeks you will continue to be cared for by the specialist nurse and radiographer. You may come to The Sussex Cancer Centre to meet with them or if it is more convenient for you, we will telephone you at home and discuss your recovery from treatment with you. The radiotherapy which you have had will continue to have an effect on you for the next few weeks. You should continue to take you pain killers and get plenty of rest while you recover both physically and emotionally. We will write to your GP giving him or her details of the treatment, its side effects and any necessary information on continued medication. If you have any worries during this period, please let us know. Continued support You will be given an appointment to see the multidisciplinary team at the Cancer Centre in Brighton approximately six weeks after the completion of treatment. The team will continue to support you either at the Royal Sussex County Hospital or your local hospital depending on where you live. Our aim is to support you and your family during this difficult. Please help us to help you by giving us feedback. 10
11 Useful telephone numbers Macmillan head and neck cancer specialist nurses Brighton Ext Worthing Ext Eastbourne Macmillan head and neck specialist radiographer Ext Macmillan speech and language therapists Brighton Ext Eastbourne Ext Macmillan dietitian Brighton Ext Worthing Ext Hastings Macmillan Psychological Support Team ENT enquiries Ext Maxillofacial enquiries Ext Cancer Centre reception Ext Radiotherapy reception Chemotherapy Royal Sussex County Hospital Ext Eastbourne District General Hospital Ext Howard 1 Ward Ext Level 8A East Ward Ext. 4345/6 Macmillan Information Line (including Macmillan benefits helpline) Countrywide supplies (Tracheostomy and Laryngectomy service) NHS Free smoking helpline Benefits enquiry line, Brighton and Hove Sussex Cancer Network Support Group for all head and neck patients; contact your key worker. 11
12 Useful Websites websites Brighton and Sussex University Hospitals NHS Trust Disclaimer The information in this leaflet is for guidance purposes only and is in no way intended to replace professional clinical advice by a qualified practitioner. C P I G Ref number: 460 Publication Date: June 2012 Review Date: June 2014 carer and patient information group approved
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