Radiotherapy to the Head for Brain Tumours Information for Patients Northern Centre for Cancer Care Freeman Hospital
Introduction Your oncologist has advised a course of radiotherapy to your head as part of your treatment for a brain tumour. This leaflet has been written to give you general information and answer some of the questions you may have about the side effects of radiotherapy. We hope you will find this helpful. If you have any further questions relating to your treatment please do not hesitate to ask your radiographer, nurse or oncologist. Possible short term side effects Early side effects are temporary and affect most patients. The side effects generally develop during the second half of the course of treatment, last for several weeks after the treatment has finished and then usually settle within the next three to four months. Effects on the skin Towards the end of treatment some patients experience changes in the skin affecting the area that has been treated. The skin may feel tight and uncomfortable become pink or red become dry and flaky itch Your skin reaction may be worse and happen earlier if you are also having chemotherapy. Your skin will be monitored by your radiographers during radiotherapy and you will be given advice on skincare. 1
You will also be seen once a week in a radiotherapy clinic by your oncologist or neuro-oncology nurse specialist who will examine your skin and advise on any creams if necessary. Skin reactions may persist for up to six weeks after treatment has finished. Skin care-what can I do to help? Gently wash the treated area with warm water and a mild shampoo. Avoid long, hot showers. Don t use shower gel, bubble bath, antiseptic, body lotion, aftershave, make up or perfume on the treated area. They can make your skin dry and sore. Let your skin dry naturally, or pat it dry. Don t rub. Avoid rough flannels and towels. Try not to scratch the skin. Avoid hot sun. A wide-brimmed hat will keep you cool. Do not expose the treated area to the sun for long periods. Whilst in the sun the treated area should be covered completely or a high protective factor suncream (25 or above) should be applied. Do not use a sunbed as this could worsen the reaction. You may be given a moisturising cream to soothe the skin from the radiographers or nurses. Your oncologist may prescribe a cream if needed. How should I look after my hair? The hair in the treated area will get sparse and after two or three weeks it will fall out. When it starts to fall out, it usually happens quickly. It may take just a couple of days for it to fall out completely. Your hair should grow back after treatment but it may take a few months. It can also be a different colour or texture. If you have a high dose of radiotherapy it may not grow back at all. If this is likely to happen, we will tell you. 2
We can arrange a wig for you before your hair falls out. We can match it to your own hair colour and style. If you would like to do this, please tell your oncologist, nurse specialist or radiographer. Some women may prefer to wear a scarf or turban. Men may like to wear a cap. Choose whatever you are most comfortable with. A range of scarves and turbans are now available at the Charlie Bear shop in the main foyer at NCCC. The scalp may become sore or tender just before the hair falls out. Treat your hair gently. After washing, rinse it well, pat with a towel and let it dry naturally. It is best not to use a hairdryer, if you do, make sure you use the COLD setting. Be gentle when you comb your hair. Use a wide-toothed comb. Please ask at the Information Centre for more advice and guidance on coping with hair loss. Other effects You may get headaches but they ought to be mild and should respond to simple painkillers such as paracetamol. If headaches become severe please tell your oncologist,neuro-oncology nurse specialist or radiographer. During your course of radiotherapy you may experience some mild loss of concentration which will recover in the weeks following treatment. Your appetite may be less than usual or your sense of taste may change. You may not feel much like eating but it is important to try. Try these tips Eat little and often. Eat a bit of what you fancy! If you're too tired to cook, try a ready- made meal or cold food, or ask someone else to cook for you. 3
If you are also having chemotherapy there may be some foods to avoid. Your chemotherapy doctor or nurse will tell you more about this. If you feel sick, please tell your radiographers. You may need some medication to help. We can give you a leaflet with more tips and ideas and we can arrange for you to see a dietician if you think this would help you. Tiredness / Fatigue Radiotherapy can sometimes make you feel very tired especially towards the end of your course of radiotherapy and for a number of weeks following treatment. You should rest as much as you need to. It may be some time before you feel able to do some of your usual activities. Fatigue is something nearly everyone with cancer feels. It affects people differently and it is important to tell the health care team if you are feeling more tired than usual. There are some physical causes such as anaemia that are readily treatable. Please ask for a booklet on fatigue at the Information Centre in NCCC which may give you tips to help with this. Your emotions It is important to make time for yourself. Emotions associated with the reactions to a diagnosis of cancer may come to the surface at various stages during your treatment. Don t worry if you feel low, this is normal. If you need to talk to someone, please ask, we are here to help. We have a wide range of support services within the department, such as the neuro-oncology nurse specialist, palliative care team and social worker. A clinical psychology service is also available at NCCC on referral from your oncologist. Sex Sexual activity is personal to each individual and may be an aspect of your life about which you have concerns relating to your disease or treatment. You may have questions you wish to ask. Please talk to your 4
oncologist, neuro-oncology nurse specialist or radiographer if you would like to talk about these issues confidentially. There is more information available in the Information Centre at NCCC. Pregnancy It is very important that women are not and do not become pregnant whilst undergoing radiotherapy. Please inform a member of staff immediately if you think you may be pregnant. You will be asked (if appropriate) to confirm that you are not pregnant by one of the radiographers before starting treatment. What else do I need to do? You may not legally drive or hold a driving licence if you are being treated for a brain tumour. You must tell the DVLA that you are being treated for brain tumour. Please phone them as soon as you can on (01792) 783686. Possible long-term or permanent effects of treatment The skin in the treated area may always be more sensitive to strong sunshine in the future. Even after your hair has grown back you can protect your head by using a sun block or a sun cream of at least factor 25. Wearing a hat or cap is another option. You may find that you can t concentrate as well as you could before your treatment in learning complex new tasks. This would rarely be expected to affect everyday life. The possibility of hormonal underproduction. If this happens, you may need regular blood tests to monitor your hormone levels. Some people get more side effects than others. Everyone is different. The side effects you get will depend on the part of your brain we are treating. Your progress You will be seen by a member of your specialist team once a week during your treatment. This will be an opportunity to discuss any concerns or problems you may have. 5
Please tell your treatment radiographers if you have any problems between appointments. During and after your radiotherapy steroids may be used to help with symptom management. This medication may need to be altered from time to time. After your radiotherapy has finished The side effects of radiotherapy can continue for several weeks after treatment has finished. Continue with your skincare routine until any changes return to normal. Protect the treated area from extremes of weather, such as hot sun and cold winds. You may feel lethargic after treatment. The feeling may get worse before it gets better. You may have increased seizure activity during radiotherapy. Please inform your oncologist if you have any seizures. A number of weeks after treatment you may become very tired and feel that your brain tumour symptoms are getting worse. This may make you think that your tumour is progressing but it is likely to be the somnolent or drowsy period that can be an after effect of your radiotherapy. Please contact your oncologist, neuro-oncology nurse specialist or GP for advice and medical support. On your last treatment you will be given a discharge letter with a copy for your GP summarising any side effects you may have and any creams or medication you have been prescribed at NCCC. You will be sent a follow up appointment to see your specialist team approximately six weeks after finishing treatment. You should get a letter giving you a date and time for your appointment. If you are worried about your side effects after your treatment has finished, please contact your neuro-oncology nurse specialist at NCCC, your referring hospital, or the NCCC Information Centre for further advice. 6
Useful contacts: Macmillan Neuro-Oncology Nurse Specialists 0191 2823739 (dect) 0191 2821918 (dect) 0191 2336161 ext 21060 Northern Centre for Cancer Care Macmillan Information and Support Centre 0191 2138611 Opening hours Monday to Friday from 9am to 4.30pm Newcastle upon Tyne Hospitals NHS Foundation Trust www.newcastle-hospitals.org.uk CancerBACUP freephone 0808 800 1234 www.cancerbacup.org.uk Macmillan Cancer Relief Head office 020 7840 7840 freephone 0808 800 1234 www.macmillan.org.uk For further information about hair loss please contact Breast Cancer Care www.breastcancercare.org.uk Tel 0808 800 6000 This contact is not just for breast cancer patients but can be accessed for all patients experiencing hair loss. Information produced by Carole Downs Superintendent Radiographer and the Neuro-Oncology team. March 2012 Review date: March 2014 Patient Information Series R/T 5 V3 7