University College Hospital

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1 University College Hospital Radiotherapy for head and neck cancers: things that need to be done before starting treatment Radiotherapy Department Patient information series 53

2 2 If you need a large print, audio or translated copy of the document, please contact us on: (Direct line) ext 73711/bleep ext 73711/bleep 1458 We will try our best to meet your needs.

3 3 Contents Introduction 5 Nutritional support 6 Percutaneous endoscopic gastrostomy (PEG) 6 Dental assessment 8 Kidney function tests 9 Hearing tests 9 The radiotherapy planning process 10 Radiotherapy CT planning scan 10 Radiotherapy plan check 11 Starting treatment 11 During treatment 12 Hospital transport 12 Is there anything I can do to help myself? 13 Useful contact numbers 14 Space for notes and questions 18

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5 5 Introduction This booklet has been written for patients who are about to start a course of radiotherapy to the head and neck area. Before starting treatment you may need to have a number of tests. These tests will help ensure your treatment goes as smoothly and safely as possible. This booklet describes some of those tests you may be asked to have. It also explains the radiotherapy planning process and treatment. We understand that this is an anxious time for patients. You may feel that you have been given lots of information about what needs to be done in a short period of time. Some of the things that need to be done may sound worrying at first. We hope this booklet answers some of your questions. If you still have any questions or concerns, please let your doctor, nurse or radiographer know. We are here for you. This booklet is one of a series and may be read together with the following booklets which you will receive at clinic: Radiotherapy to the head, mouth and neck A visit to the mould room An introduction to the radiotherapy department.

6 6 Nutritional support Nutrition (food intake) is very important during your treatment to maintain your weight and to ensure you have a healthy diet. You will be assessed by our dieticians before starting your radiotherapy treatment to ensure that your food intake is good. To help support your nutrition and maintain your weight during treatment we may suggest that you start nutritional support. Nutritional support is used to help people who are not able to eat or drink normally. It can: prevent weight loss help people who need to build themselves up to put on weight give liquid food to overcome weakness or tiredness make sure that people take in enough liquid ease the pressure of having to eat, for example, if people have problems swallowing and find it difficult to eat. We may recommend that you have a temporary feeding tube, also called a percutaneous endoscopic gastrostomy (PEG), inserted. It has been found that a PEG feeding tube reduces the need for patients to come into hospital during treatment. Percutaneous endoscopic gastrostomy (PEG) A PEG is a very thin plastic feeding tube. One end of the tube is placed through the abdominal wall into the stomach. The other end of the tube (approximately 6 inches/15cm) stays outside the body. Having a PEG means you won t have to swallow food and drink when your mouth and throat are very sore. A specially formulated liquid feed is passed through the tube directly into your stomach. It can also be used for medication. The PEG is discreet and most patients find they are able to manage the tube and feeding well. You may already have a PEG inserted by your surgeon to make your operation easier, or to help support you because you already have problems swallowing.

7 7 Having a PEG requires an overnight stay in hospital to allow you to have the tube put in and be taught how to look after it. Before the PEG is put in, the procedure will be explained to you by a doctor or specialist nurse. You will be asked to sign a consent form to say that you agree to having the PEG put in and that you understand why it is being done. You will be sedated to make you feel sleepy. A flexible tube with a light at the end (an endoscope) is passed through your mouth down into your stomach. Your stomach is inflated with air and the endoscope is positioned so that the light at the end shines through your abdominal wall to show the position of your stomach so the doctor can see where the tube needs to be placed. The skin of your abdominal wall is then cleaned and a local anaesthetic is used to numb the area. A small cut is made through the skin and muscle and the PEG is inserted into your stomach, which is then held in place inside by a small balloon. Before you go home the nurses and dieticians will teach you how to care for your tube and how to administer the liquid feed. The dieticians will advise you how much feed to take daily. If you have a feeding tube, you will keep it until you are fully recovered from your treatment. The PEG will not be removed until you are able to maintain your weight and food intake by eating and drinking by mouth in a manageable way. Removing the tube is a straightforward day case procedure. You will be given more detailed information about the risks and benefits of PEG feeding and any alternatives by the Endoscopy Unit and the dieticians.

8 8 Dental assessment Radiotherapy to the mouth area can cause long-term problems with your teeth and jaw bone. In order to minimise these late effects we will ask a specialist dentist to see you. They will assess your teeth to make sure any dental work you need is done before you start radiotherapy. Many patients do not require any specific dental treatment before radiotherapy. However, the dentist may suggest it is safer to remove some or, in some cases, all of your teeth, before radiotherapy starts. This is to avoid any long-term complications with your teeth and jaw bone. If it is necessary to remove all your teeth, in most cases it will be possible to fit you with dentures. This may not be until your radiotherapy has finished. The fit of any dentures will be affected by any swelling and soreness that treatment may cause. It may be several months before your dentures fit well. If you have any teeth removed it may cause some temporary swelling for a week or so. This means we will need to wait for any swelling to get better before we make your mask. This pre-treatment dental assessment (and ongoing care of your teeth after treatment has finished) is very important for the following reasons: If the area treated includes the jaw bone, over time your teeth may discolour or decay. This is because the blood supply to the area is reduced. Radiotherapy may also cause gum shrinkage which may cause further dental problems. If a tooth is removed from a jaw that has been treated with radiotherapy, healing is slower and the bone in which the tooth sits may develop long-term problems. Radiotherapy may cause a permanently dry mouth by damaging your salivary glands. Your main saliva glands are situated in front of your ears on either side of your face. Saliva is important in preventing tooth decay. Without it, you will be more prone to developing dental problems. If your tumour is close to this area, or the lymph glands in your upper neck on both left and right sides need treating, you may develop this side effect. Your doctor will tell you if this is a concern.

9 9 Kidney function tests If you are having chemotherapy as part of your treatment, it is important to check that your kidneys are working properly. Some chemotherapy drugs can occasionally damage the kidneys, so the function of the kidneys needs to be checked. The kidney function test is done as an outpatient in the nuclear medicine department. The test involves having an injection of a radioactive isotope into a vein in your arm through a small cannula (drip tube). After this, samples of your blood are taken at regular intervals, up to three hours afterwards, from the cannula. This test result takes a few days to be calculated. More detailed information about this test will be provided by the nuclear medicine department. Hearing tests If you are going to have radiotherapy near your ears, or having certain chemotherapy drugs, your doctor may arrange for you to have a hearing test before you start treatment. Some patients may experience hearing difficulties after their treatment has finished. If your doctors know what your pre-treatment level of hearing is, they can establish any future changes to your hearing with more accuracy. Your doctor will let you know if this is a potential problem for you.

10 10 The radiotherapy planning process When you receive your appointments for radiotherapy you will usually be given four separate dates to attend the radiotherapy department. Radiotherapy is a complex treatment and we must spend some time planning your treatment before it is delivered. Your first appointment is for the doctors and radiographers to decide on what treatment position is best for you. This depends on several factors, including how easy you can lie in a certain position and where your cancer was/is. Most head and neck cancer patients are treated lying on their back, with a headrest to support the neck and a sponge under the knees to help support the back. When your treatment position is decided upon you will then go to the mould room to have your mask (otherwise known as a shell ) made. You will have been given a copy of the leaflet entitled A visit to the mould room. When your mask has been made you will be asked to attend for an appointment where you will have a computerised tomography (CT) scan of your head and neck whilst wearing your treatment mask. Radiotherapy CT planning scan You may have already had a CT scan as part of your diagnosis. You will still need a radiotherapy CT planning scan as it will give us very accurate information on where we need to treat you. The scan takes about 20 minutes. The radiographers will mark lines on your mask and put a permanent mark on your chest. These will be used to ensure you are in the correct position each day for your treatment. The mark is made by placing ink on the skin and then gently scratching the surface of the skin with a fine needle. Once the scan is over, you will be given an appointment for about two weeks for a radiotherapy plan check. This time is needed in order to decide how best to treat your tumour, whilst at the same time avoiding any normal delicate tissue around the area.

11 11 Radiotherapy plan check This appointment is an important final check of your treatment and may be thought of as a dummy run of your treatment. This will take approximately half an hour, but can sometimes take longer. The plan check takes place on the treatment unit. You will be positioned lying on the couch, on your back, wearing your mask. The radiographers will ensure you are in the correct position by aligning the marks on your mask and chest using laser lights. Measurements are taken and re-checked against your personal treatment plan which has been approved by your doctors. X-ray images will also be taken of your head and neck so the doctors can see the exact area which is receiving the treatment. When we are happy we shall put some more pen marks on your mask to help the treatment radiographers set up your treatment every day. Very occasionally, we find that the mask or the measurements are not as good as we need them to be and we have to start the planning again. Whilst we appreciate that this is a frustrating thing to happen, if for any reason we are not happy with your plan check it is vital that steps are taken to ensure that these concerns are addressed, so that your treatment is as accurate and safe as possible. In the event of a problem we will keep you fully informed. Starting treatment You will be given a date to start your treatment a few days after your plan check. This gives us time to input your particular information onto the computers on the treatment machines and to allow the radiographers to check your treatment details.

12 12 During treatment During treatment you will be seen once a week in a special multidisciplinary head and neck clinic. This clinic consists usually of a doctor, nurse, speech and language therapist, dietician and radiographer. Together you will discuss any concerns you may have regarding your radiotherapy treatment. These may include pain control, nutritional advice, swallowing and communication advice, skin advice and support. You will be given a personal booklet to bring with you to the clinic, in which you can write your experiences, questions and notes during your treatment. The clinic takes place on a Thursday morning so your appointment time for that day may be altered and you may experience some delay. Very occasionally, we run into problems with the mask or treatment plan during treatment. If this happens we may call the mould room or planning department to come and see your set-up on the treatment unit. Sometimes we may have to take you back to the CT scanner to make adjustments. Rarely, we have to make a new mask in the middle of a course of treatment. Hospital transport Any patient requiring hospital transport must now be assessed by a member of the radiotherapy nurse-led assessment team. You will be given a booklet called The radiotherapy department patient transport scheme which explains the procedure in more detail. If you require help with your fares please contact the Macmillan information and support radiographer (see leaflet provided, or ask at your next appointment). If you require an appointment at a certain time to allow travelling to be more convenient, we will do our best to oblige. Please let us know if travelling is difficult for you.

13 13 Is there anything I can do to help myself? This is a commonly asked question. We appreciate that most patients are very keen to do all they can to ensure the success of their treatment. There are three things that you can concentrate on during treatment: Stop smoking We recommend that you should stop smoking not only during your radiotherapy treatment, but altogether. Continuing to smoke during radiotherapy can worsen the side effects you may experience. We appreciate that stopping smoking may be very difficult for you to do. Your GP will be able to offer advice on smoking cessation. If you do not have a specialist nurse, there is a qualified smoking cessation advisor within the Trust who will be able to offer practical support if you wish to stop smoking. There is a leaflet available with advice and information called The benefits of giving up smoking prior to and during radiotherapy treatment to the head and neck area. Attend all treatments It is very important that you attend for all your treatment appointments. Any missed treatments have the potential to reduce the success of treatment. If for any reason you are unable to attend for treatment, please inform us at the earliest opportunity so that we can do our best to help you attend or to put in place a plan to make up for the missing treatment. Concentrate on your nutrition It is important that your nutrition is as good as it can be to help you feel stronger and more able to cope with treatment. We will arrange for you to see a dietician to ensure that your nutrition is as good as possible before your radiotherapy starts. You will also see the dietician weekly during treatment. We will aim to keep your weight stable during treatment and monitor this very carefully. Please ensure that you follow any nutritional advice as much as possible.

14 14 Useful contact numbers Local Radiotherapy Head and Neck Specialist Radiographer Maria Kilkenny Direct telephone: Main switchboard: ext bleep 1096 Alternative switchboard: ext bleep 1096 Radiotherapy Care Team Direct telephone: Main switchboard: ext bleep 2222, 5825 or 2075 Alternative switchboard: ext bleep 2222, 5825 or 2075 Macmillan Information and Support Radiographer Mark Williams Direct telephone: Main switchboard: ext bleep 1458 Alternative switchboard: ext bleep

15 15 Clinical Nurse Specialists Khalda Meer Mobile: Main switchboard: bleep 7198 Alternative switchboard: bleep Lynda Farmer Mobile: Direct telephone: Main switchboard: bleep 5810 Alternative switchboard: bleep Andrew Holroyd Mobile: Direct telephone: Main switchboard: bleep 5640 Alternative switchboard: bleep Dr Dawn Carnell secretary Direct telephone: Dr Ruheena Mendes secretary Direct telephone:

16 16 National National Association of Laryngectomee Clubs (NALC) Telephone: Fax: Macmillan Cancer Support Cancer Line freephone: Monday to Friday, 09:00 to 21:00 Textphone: Monday to Friday, 09:00 to 18: Cancer Help UK Freephone Helpline: Monday to Friday, 09:00 to 17:00 Carers UK Freephone: Cancer Research UK National Library for Health Covers all aspects of health, illness and treatments Health Talk Online

17 17 NHS Direct Telephone: Available 24 hours NHS 24 Telephone: NHS Choices Patient UK Comprehensive, free, up-to-date health information

18 18 Space for notes and questions

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20 First published: December 2006 Last review date: October 2013 Next review date: October 2015 Leaflet code: UCLH/S&C/CD/RT/H&NPRE-TX/2 University College London Hospitals NHS Foundation Trust Created by Medical Illustration RNTNEH Unique Code: 28943