University College Hospital. Radiotherapy to the adult brain and spine. Radiotherapy Department Patient information series

Transcription

1 University College Hospital Radiotherapy to the adult brain and spine Radiotherapy Department Patient information series 43

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 Information for female patients 5 Consent to treatment 6 What is radiotherapy? 6 Planning treatment to the whole CNS 7 Having a radiotherapy CT planning scan 7 Radiotherapy treatment 8 Side effects during treatment 9 Planning your treatment 13 Radiotherapy and chemotherapy 14 Radiotherapy treatment 15 Side effects during treatment 16 Side effects after treatment 21 Late side effects of radiotherapy 22 Support 25 After your radiotherapy has fi nished 26 Useful contact numbers 27 Space for notes and questions 30

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5 5 Introduction This booklet has been written for patients who are having radiotherapy treatment to the brain and spine. This could be for a glioma, medulloblastoma/primitive neuroectodermal tumour (PNET), germinoma/germ cell tumour, leukaemia or some other condition. The treatment may also be referred to as whole central nervous system (CNS) or cranio-spinal radiotherapy. The booklet describes: What is radiotherapy. How your treatment is planned and delivered. The side effects you may experience during and after treatment, and how best to cope with them. 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. 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. Information for female patients It is very important that you should not be or become pregnant at any time throughout your course of radiotherapy and for up to four months afterwards. If you are unsure of this issue or if you think you may be pregnant at any time during your treatment, it is extremely important that you discuss this with your radiotherapy doctor, the radiographers or nurses immediately.

6 6 Consent to treatment Before you start your treatment, your radiotherapy doctor or a member of their team will discuss your treatment with you. Together with you, they will consider the risks and benefits of the different treatment options available, and decide how to proceed. You will be asked to sign a consent form stating that you understand what radiotherapy to the brain and spine involves, and that the risks, benefits and possible side effects of treatment have been explained, and you have been given the opportunity to ask any further questions. Please contact your doctor, your specialist nurse, or the Macmillan Information and Support radiographer if you have any concerns before your treatment. What is radiotherapy? Radiotherapy is treatment using high energy X-rays, aimed specifically at the site of the tumour. It is a quick and painless procedure. Radiotherapy has clear benefits since it is a localised treatment which destroys any microscopic tumour cells and reduces the risk of recurrence of the disease. However, no treatment is completely risk free. In recommending your treatment, your radiotherapy doctor (Clinical Oncologist) has weighed up the risks and benefits. Please do discuss these issues with your doctor or a member of the radiotherapy team if you are worried. Radiotherapy is planned to treat as little normal body tissue as possible and treatments are usually extended over a period of weeks. This allows normal cells to recover from the effects of the radiation. Common treatment prescriptions vary between three to six weeks, treating daily, excluding weekends. Your exact treatment schedule will be decided by your doctor and confirmed on your first visit to the radiotherapy department.

7 7 Planning treatment to the whole CNS Radiotherapy is a very precise treatment. In order to ensure treatment accuracy on a daily basis, your first visit will involve having a plastic mould (also called a mask or immobilisation shell) made of your head and shoulders to ensure you are in the correct treatment position. The mask has three purposes: To keep your head and neck immobilised during treatment To ensure you are in the same position everyday for treatment To minimise the number of treatment marks on your skin The mask is made from a sheet of thermo-plastic material called Posicast. The sheet is hard when dry and is placed in warm water to allow it to soften. This is placed over your head and neck and held into position, for five minutes, until it begins to dry and harden. Once the mask is made your next visit will be for a radiotherapy computerised tomography (CT) planning scan. Having a radiotherapy CT planning scan You will be positioned on the CT scanner couch wearing your mask, with a support cushion under your knees. The radiographers will ensure you are straight and will then place some tape on your mask and draw marks on this tape. They will also place a reference mark on your chest and pelvis using felt tip pens. They will then place sticky wire markers on these marks which will show up on the scan. The scan will take about five minutes, during which time you can breathe normally. Once the scan is complete the radiographers will remove the mask. They will make the reference marks on your chest and pelvis into permanent marks. These are the setup co-ordinates for your treatment and ensure repeatable treatment accuracy on a daily basis. This is done by placing ink on your skin and gently scratching the surface of the skin with a fine needle.

8 8 After the scan is completed, you will be free to leave the hospital. Before you go, you will be given an appointment card with the date and time for your next visit, which will be radiotherapy treatment. Radiotherapy treatment The radiotherapy treatment is daily, Monday to Friday. Your radiotherapy doctor will have already told you how many treatments you will be having. Your treatment will be on a machine called a Linear Accelerator. The treatment radiographers will explain the procedure to you and answer any questions you may have. For each treatment session you will be lying on your back, on the treatment bed, wearing your immobilisation shell. The radiographers will ensure you are in the correct treatment position by aligning the marks on the shell with laser lights. They will then move the treatment machine and couch into position using your personal treatment plan. When final verbal checks have been made, the radiographers leave the room. To give you the best treatment you will be treated from several different angles. The linear accelerator will move around you, but will not touch you. You will not feel anything and you do not have to hold your breath. All we ask is that you keep still. The radiographers will be watching you at all times on a closed circuit television. Please check with your radiographers if you have any questions or concerns. Each treatment session takes about 30 minutes. Most of this time is spent getting you in the right position and taking images to ensure treatment accuracy. The treatment from each angle only takes a few minutes.

9 9 Side effects during treatment There will be some side effects which will gradually appear during your course of radiotherapy, although these will vary from person to person. The risk and severity of any side effects occurring depends on the dose of radiotherapy given. Your radiotherapy doctor will discuss this fully with you. There are side effects that occur during treatment, some happen soon after treatment, and some can occur months or years after radiotherapy. We give radiotherapy treatment in addition to surgery and/or chemotherapy. Patients receiving chemotherapy in addition to radiotherapy may experience more severe or additional side effects to those listed here, depending on the drug regimen used. The doctors will discuss these issues with you. The main side effects that occur during treatment are: Skin changes The skin in the area being treated may become red, flaky and itchy during the radiotherapy treatment. You may get some dry peeling of the skin on your head. The skin behind your ear or the ear itself (if this is included in the treatment fi eld) may become sore and moist. How to look after your skin During treatment we advise that you wash your skin gently using warm water and a non-perfumed soap. Pat the skin dry with a soft towel. Do not rub the treatment area. Aqueous cream, which will be given to you at the start of your treatment, may be applied to the treated skin. This is a simple, unperfumed moisturising cream to help prevent the skin from becoming too dry. The cream can be used from the start of treatment. Apply the cream between two and three times per day. Smooth a little cream very gently onto the treatment area. If your skin becomes broken and sore do not use aqueous cream. You will be referred to the radiotherapy care team for advice.

10 10 Avoid exposing the skin in the treated area to strong sunlight, both during and after your radiotherapy treatment. Ensure that you wear a hat, cap or head scarf at all times when outside to protect your head and neck, and that you wear a top to protect the skin on your back. Radiotherapy causes changes to the skin which makes it more sensitive to the sun. Your skin will damage more easily and take longer to heal. The treated area will be especially sensitive for the first twelve months and you should avoid exposing the treated area to strong sunlight. After this time you can gradually increase the sun exposure but we recommend that you always use a high protection sun cream (Factor 25 or more) in strong sunlight. Do not use any other creams or lotions in the areas being treated unless advised by a member of staff. Hair loss Some patients may have already experienced hair loss due to chemotherapy, but some may still have their hair when they start radiotherapy. Hair loss usually occurs after three weeks of radiotherapy treatment, and this will be total hair loss. The hair usually starts to grow back about three months after treatment. The new growth will often be slightly different in colour and texture. Your hair might not grow back completely in the areas which have had a very high dose of radiation. This is usually the area at the back of the head. The doctors will advise you about this. Managing hair loss Losing hair can be very distressing as it is a radical change in one s body image. You may feel emotional about losing your hair and this is quite natural. Try cutting your hair short before you begin treatment (and before you have your mould made). This is less distressing than losing long hair and it will also give you time to adjust to losing your hair and to the change in your body image.

11 11 You may wash your hair gently, using warm water and a mild unperfumed shampoo. Limit your hair washing to two or three times a week. When drying, use a soft towel and gently pat your scalp dry. You may also use a hair dryer on a cool setting or leave your hair to dry naturally. Do not use any harsh hair treatments such as hot rollers, conditioners, perm solutions, hair sprays or hair colourings. Brush and comb your hair gently using a baby (or other soft) brush or a wide rounded toothed comb. Wigs are available on prescription through the NHS. Alternatively, you may wish to purchase your own through a large department store or your own hair stylist. If you wish to discuss wigs with the hair specialist, please ask to speak to the Macmillan information and support radiographer. Alternatively, some people choose not to wear a wig, except on certain occasions. They may choose a fashionable and practical hat, turban, cap or scarf. If you are experiencing diffi culties coming to terms with your hair loss and you feel the need to speak to someone talk to your specialist nurse, the Macmillan information and support radiographer or radiotherapy care team. They are here to help you and can refer you to other health professionals for further advice and support. Feeling sick (nausea) Following a treatment session some patients may feel sick (nauseated) and vomit. Radiation can cause a temporary swelling of the treated area in the head or radiation to the spine can pass through and irritate the abdomen. You will have been prescribed regular antisickness medication to take during treatment. However, if you are still experiencing symptoms it is important to inform a member of staff who can refer you to a doctor for further medication.

12 12 Headaches The radiotherapy treatment may cause the brain to swell slightly and so you may develop signs and symptoms of raised intracranial pressure, which can include headaches, nausea, vomiting or double vision. This is usually for a short period of time, but it is important to discuss these reactions with your doctor or specialist nurse so the right treatment and support can be given. These reactions are temporary and are usually relieved by steroids. Steroids may be prescribed depending on your symptoms. The steroid dose is gradually reduced and discontinued when treatment is completed. If you have a VP shunt (a tube draining fluid from the brain to the heart or gut) and are experiencing headaches, it is important to seek advice from your doctor or specialist nurse. It may be an indication of a blocked shunt. Diarrhoea You may experience loose bowel motions during your radiotherapy treatment. This is due to the radiation to the lower part of your spine irritating your bowel. If you are experiencing diarrhea, please inform a member of staff as they can advise you about anti-diarrhoeal medication. You may also experience pain and/or cramping sensations. It is important that you maintain a good fluid intake if this is a problem, between one and two litres a day. This can include water, squash or hot drinks. Please ask for a copy of the leafl et Coping with constipation or diarrhoea.

13 13 Planning your treatment Planning treatment to the cervical spine (neck) Your first visit will involve having an impression taken of your head and shoulders to ensure you are in the correct treatment position. Because radiotherapy is a very precise treatment a plastic mould (also called an immobilisation shell) is made of the area to be treated in order to ensure treatment accuracy on a daily basis. The immobilisation shell has three purposes: to keep your neck immobilised during treatment to ensure you are in the same position everyday for treatment to minimise the number of treatment marks on your skin The immobilisation shell is made from a sheet of thermoplastic material called Posicast. The sheet is hard when dry and is placed in warm water to allow it to soften. This is placed over your head and neck and held into position until it begins to dry and harden. Once the immobilisation shell is made your next visit will be for a radiotherapy computerised tomography (CT) planning scan. Having a radiotherapy CT planning scan You will be positioned on the scanner couch wearing your immobilisation shell. The radiographers will place some tape on your shell and draw marks on this tape. They will also place a reference mark on your chest using felt tip pens. The CT scan will take about fi ve minutes, during which time you can breathe normally. Once the scan is complete the radiographers will remove the immobilisation shell. They will make the reference mark on your chest into a permanent mark. This is done by placing ink on your skin and gently scratching the surface of the skin with a fine needle.

14 14 Planning treatment to the thoracic and lumber spine (upper and lower back) You will be positioned on the CT scanner couch lying on your back with supports under your head knees and ankles. Your arms will be positioned either by your sides or across your chest. The radiographers will ensure your body is straight. They will then place some temporary marks on your skin using felt tip pens. They will then place sticky wire markers on these marks which will show up on the scan. The scan will take about fi ve minutes, during which time you can breathe normally. Once the scan is complete the radiographers will mark three or four specifi c points on your chest/pelvis. These are the co-ordinates for your treatment and ensure repeatable treatment accuracy on a daily basis. The points are permanent and are made by placing ink on your skin and gently scratching the surface of the skin with a fine needle. Radiotherapy and chemotherapy Some patients will be given drug treatment (chemotherapy) before or during their radiotherapy. The chemotherapy increases the activity of the radiotherapy against cancer cells. Your doctor will tell you which chemotherapy you will be having. Patients receiving chemotherapy in addition to radiotherapy may experience more severe or additional side effects to those listed here, depending on the drug regimen used. It is possible the use of chemotherapy may increase the likelihood of nausea with your treatment. It may also cause small ulcers in the mouth. The doctors will discuss these issues with you. You will be given detailed fact sheets about the chemotherapy drugs and their side effects by the chemotherapy nurses. If you have any concerns or further questions please do not hesitate to ask for help.

15 15 Radiotherapy treatment The radiotherapy treatment is daily, Monday to Friday. Your radiotherapy doctor will have already told you how many treatments you will be having. Your treatment will be on a machine called a Linear Accelerator, or Linac, for short. The radiographers will explain the treatment procedure to you and answer any questions you may have. For each treatment session you will be lying on your back on the treatment couch. If you are having your cervical spine (neck) treated you will be wearing your mask. If you are having treatment to the thoracic spine (upper back) or lumbar spine (lower back) you will be lying on your back with supports under your head knees and ankles. Your arms will be positioned either by your sides or across your chest. The radiographers will ensure you are in the correct treatment position by aligning the marks on your mask or the permanent marks on your chest or pelvis with laser lights. They will then move the treatment machine and couch into position using your personal treatment plan. When final treatment checks have been made, the radiographers leave the room. To give you the best treatment you will be treated from several different angles. The linear accelerator will move around you, but will not touch you. You will not feel anything and you do not have to hold your breath. All we ask is that you keep still. The radiographers will be watching you at all times on a closed circuit television. Please check with your radiographers if you have any questions or concerns. Each treatment session takes about 15 minutes. Most of this time is spent getting you in the right position. The treatment from each angle only takes a few minutes.

16 16 Side effects during treatment There will be some side effects which will gradually appear during your course of radiotherapy, although these will vary from person to person. The risk and severity of any side effects occurring depends on the dose of radiotherapy given. Your radiotherapy doctor will discuss this fully with you. There are side effects that occur during treatment, some happen soon after treatment, and some can occur months or years after radiotherapy. We give radiotherapy treatment in addition to surgery and/or chemotherapy. Patients receiving chemotherapy in addition to radiotherapy may experience more severe or additional side effects to those listed here, depending on the drug regimen used. The doctors will discuss these issues with you. The main side effects that occur during treatment are: Skin changes The skin in the area being treated may become red, flaky and itchy during the radiotherapy treatment. You may get some dry peeling of the skin on your head. The skin behind your ear or the ear itself (if this is included in the treatment fi eld) may become sore and moist. How to look after your skin During treatment we advise that you wash your skin gently using warm water and a non-perfumed soap. Pat the skin dry with a soft towel. Do not rub the treatment area. Aqueous cream, which will be given to you at the start of your treatment, may be applied to the treated skin. This is a simple, unperfumed moisturising cream to help prevent the skin from becoming too dry. The cream can be used from the start of treatment. Apply the cream two to three times per day. Smooth a little cream very gently onto the treatment area. If your skin becomes broken and sore do not use aqueous cream. You will be referred to the radiotherapy care team for advice.

17 17 Avoid exposing the skin in the treated area to strong sunlight, both during and after your radiotherapy treatment. Ensure that you wear a hat, cap or head scarf at all times when outside to protect your head and neck, and that you wear a top to protect the skin on your back. Radiotherapy causes changes to the skin which makes it more sensitive to the sun. Your skin will damage more easily and take longer to heal. The treated area will be especially sensitive for the first twelve months and you should avoid exposing the treated area to strong sunlight. After this time you can gradually increase the sun exposure but we recommend that you always use a high protection sun cream (Factor 25 or more) in strong sunlight. Do not use any other creams or lotions in the areas being treated unless advised by a member of staff. Hair loss Some patients may have already experienced hair loss due to chemotherapy, but some may still have their hair when they start radiotherapy. Hair loss usually occurs after three weeks of radiotherapy treatment, and this will be total hair loss. The hair usually starts to grow back about three months after treatment. The new growth will often be slightly different in colour and texture. Your hair might not grow back completely in the areas which have had a very high dose of radiation. This is usually the area at the back of the head. The doctors will advise you about this. Managing hair loss Losing hair can be very distressing as it is a radical change in one s body image. You may feel emotional about losing your hair and this is quite natural. Try cutting your hair short before you begin treatment (and before you have your mould made). This is less distressing than losing long hair and it will also give you time to adjust to losing your hair and to the change in your body image.

18 18 You may wash your hair gently, using warm water and a mild unperfumed shampoo. Limit your hair washing to two or three times a week. When drying, use a soft towel and gently pat your scalp dry. You may also use a hair dryer on a cool setting or leave your hair to dry naturally. Do not use any harsh hair treatments such as hot rollers, conditioners, perm solutions, hair sprays or hair colourings. Brush and comb your hair gently using a baby (or other soft) brush or a wide rounded toothed comb. Wigs are available on prescription through the NHS. Alternatively, you may wish to purchase your own through a large department store or your own hair stylist. If you wish to discuss wigs with the hair specialist, please ask to speak to the Macmillan information and support radiographer. Alternatively, some people choose not to wear a wig, except on certain occasions. They may choose a fashionable and practical hat, turban, cap or scarf. If you are experiencing difficulties coming to terms with your hair loss and you feel the need to speak to someone talk to your specialist nurse, the Macmillan information and support radiographer or radiotherapy care team. They are here to help you and can refer you to other health professionals for further advice and support. Feeling sick (nausea) Following a treatment session some patients may feel sick (nauseated) and vomit. Radiation can cause a temporary swelling of the treated area in the head or radiation to the spine can pass through and irritate the abdomen. You will have been prescribed regular antisickness medication to take during treatment. However, if you are still experiencing symptoms it is important to inform a member of staff who can refer you to a doctor for further medication. Headaches The radiotherapy treatment may cause the brain to swell slightly and so you may develop signs and symptoms of raised intracranial pressure, which can include headaches, nausea, vomiting or double vision. This is usually for a short period of time, but it is important to discuss these reactions with your doctor or specialist nurse so the right treatment and

19 19 support can be given. These reactions are temporary and are usually relieved by steroids. Steroids may be prescribed depending on your symptoms. The steroid dose is gradually reduced and discontinued when treatment is completed. If you have a VP shunt (a tube draining fluid from the brain to the heart or gut) and are experiencing headaches, it is important to seek advice from your doctor or specialist nurse. It may be an indication of a blocked shunt. Diarrhoea You may experience loose bowel motions during your radiotherapy treatment. This is due to the radiation to the lower part of your spine irritating your bowel. If you are experiencing diarrhea, please inform a member of staff as they can advise you about anti-diarrhoeal medication. You may also experience pain and/or cramping sensations. It is important that you maintain a good fluid intake if this is a problem, between one and two litres a day. This can include water, squash or hot drinks. Please ask for a copy of the leafl et Coping with constipation or diarrhoea. Sore throat You may begin to experience a sore throat about two to three weeks into radiotherapy. This is because radiation to the top of your spine irritates your throat. You may experience discomfort when eating certain foods. If you are experiencing difficulty swallowing food please speak to the radiographers treating you or the radiotherapy care team. They can refer you to the dietitians for further advice and support. Blood and bone marrow system Radiation to the spine may affect the bone marrow (which makes blood cells) in the vertebrae (spinal bones). The white blood cells (which fi ght infection) and platelets (which are important for blood clotting) may be affected. Your blood count will tend to fall as radiotherapy treatment progresses. Regular blood tests will be required (two per week when treating the spine). This will be done at University College London Hospital.

20 20 If you require a blood transfusion, this will be arranged by your medical team. In a very small number of cases some patients may require daily blood counts and you need to be aware that a low white count or platelet level may cause treatment to be temporarily stopped. Hearing problems You may experience temporary hearing diffi culties. There may be swelling in the inner ear due to the radiotherapy which can cause fluid to accumulate in the ear. You may also experience a hardening of the wax in your ears if your ears are in, or near, the area being treated. Please speak to your specialist nurse if you are anxious about this. Decreased sex drive (libido) Your desire for sexual activity may be lowered due to your hormone levels being affected, stress, or because you are just too tired. Share your thoughts with your partner. Explain that this is a side effect of treatment, not a change in your feelings. Your sexual desires will return to normal once treatment ends. If you or your partner are concerned, please speak to your doctor or your specialist nurse. Changes in appetite Your appetite may increase or decrease during the course of treatment. Some people lose weight due to a change in appetite, while others gain weight, usually due to the steroids they are taking. It is important that you try to eat a healthy balanced diet during radiotherapy to help you feel stronger and more able to cope with treatment. It is also important to drink plenty of fluids, between one and two litres a day. This can include water, squash or hot drinks. If you are losing weight, try to supplement your eating with high energy calorie drinks. Eat what appeals to you. Have snacks handy to nibble on throughout the day. Liquids may be more tempting than solids. If you are worried about any weight loss please ask to see the dietitian who can give you advice. Weight gain due to steroids is generally unavoidable. Watch what you eat and try to eat healthy foods. Choose lower calorie, lower fat foods. Most people lose weight once they no longer need to take steroids.

21 21 Side effects after treatment As well as side effects that occur during treatment, there may also be side effects of radiotherapy treatment that occur several weeks after the treatment has finished. Please ask your radiotherapy doctor about the chances of such side effects occurring. These include: Somnolence syndrome Somnolence syndrome is described as excessive sleep, brain and spine radiotherapy experience some degree of fatigue and drowsiness during their treatment. Allow yourself to get plenty of rest and set your own pace. However, many patients do not have a problem with tiredness and you are encouraged to lead as normal a life as possible. There might be a particularly sleepy spell starting four to six weeks after treatment ends and going on for two to six weeks or even longer. You may feel that you have a lack of energy and cannot be bothered to do anything. This is a normal reaction to the t treatment but the long duration and sometimes the severity of the symptoms can cause anxiety. Please ask for the leafl et Coping with fatigue and tiredness. Pre-existing symptoms Some patients may experience a temporary increase in pre-existing neurological symptoms a few weeks to a few months after completion of their radiotherapy. This can be due to a build-up of dead cells which can lead to swelling. Do not panic or worry. Contact your specialist nurse, neurology doctor or your radiotherapy doctor if you notice any symptoms. Early delayed reactions are usually treated with steroids and most go away with minimal treatment. However, they can become life threatening if they are not treated properly. Therefore, it is important for your doctors to be aware if you experience these reactions so they can monitor your progress and adjust your steroid medications, if necessary.

22 22 Late side effects of radiotherapy Late side effects can occur months or years after radiotherapy has finished. The degree and frequency depends on the dose of radiotherapy given, the amount of normal brain treated and the particular site of the brain that has been treated. These late effects are the hardest to predict and, unfortunately, when they do occur they are permanent. Your radiotherapy doctor will have explained the potential late side effects of radiotherapy to you as part of the consent process. The effects may include: Hormone imbalance You may experience changes in your normal hormone levels as your pituitary gland is in the treatment area. This is called pituitaryhypothalamic dysfunction and can lead to problems with your thyroid, sugar metabolism, fertility, or ability to process water. You will be regularly monitored by the neurology and radiotherapy doctors, and your specialist nurse when you attend for follow-up appointments. If you are experiencing any problems or have any worries please do not hesitate to ask for help. Cognitive (memory and thinking) problems In a very small proportion of patients, you may experience such problems due to changes in the brain caused by long term radiotherapy effects. The small blood vessels in the brain can be effected by the radiotherapy many years after treatment. The effect on the small blood vessels is similar to the changes that occur within the brain as it ages. Symptoms can be mild, moderate or severe, depending upon the area of brain affected and the extent of the damage to normal brain cells. You may experience: Problems thinking clearly Diffi culty with managing tasks you previously found easy Poor memory Confusion Personality changes

23 23 If you are experiencing such symptoms please report these to your medical team. Neuropsychology assessments can be undertaken, and strategies to help manage any memory problems you may be experiencing can be suggested. Thyroid gland Your thyroid gland function can be affected by the radiotherapy or thyroid hormone from the pituitary gland. It may become underactive, overactive (very rarely), or tend to form lumps many years after treatment has finished. You will be monitored through regular blood tests and if a dysfunction is detected, it can easily be treated. Cavernomas Following radiotherapy to the brain, some patients may develop a small benign abnormality. These abnormal areas in the brain are due to a small tangle of blood vessels and are called cavernous haemangiomas, or cavernomas for short. In most cases they cause no problems, but are detected on a routine follow-up MRI scan. Very occasionally cavernomas may be discovered on a scan performed to investigate symptoms which might be due to tumour recurrence, but in fact have been caused by the small abnormal blood vessels bleeding. Cavernomas may appear some months or many years after radiotherapy, typically after about three years. The risk of developing a troublesome cavernoma is very low, only about one per cent. Cataracts The development of mistiness of the lenses of the eye can occur because of unavoidable radiation to the eye. This usually develops five to six years after treatment. In many cases this will not have an effect on your vision. However, in a small number of cases, some people may require surgery to remove the cataract in later years. Fortunately cataract surgery today is very straightforward and successful.

24 24 Female fertility For women who have radiotherapy to the lumbar spine (lower back) the ovaries and the womb may be near the treatment area. We are careful to minimise the risk to the ovaries, but sometimes we cannot avoid them receiving some radiation. This can lead to subfertility (reduced egg production) which may be temporary or permanent. The doctors will discuss this with you. If you wish to discuss this further please feel free to ask to see a specialist before your radiotherapy treatment begins. Male fertility The testicles are usually away from the treated area. However, if you are having treatment to the lumbar spine (lower back) small doses or radiation can scatter there. The doctors will be able to tell you if the dose to your testicles is likely to cause sub fertility (reduced sperm production) or infertility (absent sperm production), or affect the production of the male sex hormone testosterone which is important for potency. Your doctor will talk to you about this, if it is relevant to you. Kidneys Radiotherapy may affect the kidneys, if they are near the treated area. We are careful to minimise the risk to the kidneys but often cannot avoid them receiving some radiation. Your kidney function will be closely monitored at follow-up. Strokes Patients who have radiotherapy to the brain for a have a slightly higher risk (less than five per cent) than the general population of having a stroke. If you have any worries about this, please discuss it with your doctor. Second malignancy Very rarely, people who have received treatment for one particular tumour may develop another type of tumour in the treated area some years later. The radiotherapy doctors will discuss this risk if it is relevant to you.

25 25 Support This booklet deals with the physical aspects of your treatment, but your emotional wellbeing and that of your family is just as important. Having treatment can be deeply distressing for some patients. Within the radiotherapy department there will be access and support from the radiotherapy nurses, your specialist nurse, the Macmillan information and support radiographer and the treatment radiographers. However, if you feel you require further medical or emotional support you can be referred to a variety of health professionals who can help with any worries or diffi culties you may be having. All the staff are here to make sure your treatment goes as smoothly as possible and to support you through this difficult period. We will try to help you with any questions or problems you may have.

26 26 After your radiotherapy has finished Once you have finished your radiotherapy treatment you will be given a follow-up appointment to see the radiotherapy doctors in two weeks time. This will be at University College London Hospital. You will have a baseline postradiotherapy MRI scan six to eight weeks after your radiotherapy has ended. This scan will not show how effective the treatment has been, but it will be used to compare with any future scans you may have. The side effects you may have experienced will continue after radiotherapy treatment has finished. It is common to experience a worsening of the skin reactions for about 10 to 14 days after radiotherapy. Please feel free to contact the radiotherapy department or the brain tumour office if you are worried about your treatment side effects. However, most of the side effects should resolve after you have finished treatment. Before you finish your course of treatment please ask for a copy of the leafl et Finishing treatment.

27 27 Useful contact numbers Local Contact your Clinical Nurse Specialist (Key Worker) via the Brain Tumour Office at The National Hospital for Neurology and Neurosurgery. Name of Clinical Nurse Specialist: Telephone: For general enquiries contact The Brain Tumour Unit Telephone: Macmillan Information and Support Radiographer Mark Williams Direct telephone: Main switchboard: ext bleep 1458 Alternative switchboard: ext bleep Out of hours oncology advice number Mobile:

28 28 National Brain Tumour UK Helpline: Monday to Friday, 09:00 to 17:00 Website: Brain and Spine Foundation Freephone Helpline: Website: The Brain Tumour Charity Telephone: Freephone: Website: Brains Trust Telephone: Website: Macmillan Cancer Support Cancer Line freephone: Monday to Friday, 09:00 to 21:00 Textphone: Monday to Friday, 09:00 to 18:00 Website: CLIC Sargent Freephone Helpline: Monday to Friday, 09:00 to 17:00 Website:

29 29 Carers UK Freephone: Wednesday to Thursday 10:00 to 12:00 and 14:00 to 16:00 Website: Cancer Help UK Freephone Helpline: Monday to Friday, 09:00 to 17:00 Website: Cancer Research UK Website: National Library for Health Covers all aspects of health, illness and treatments Website: NHS Direct Telephone: 111 Available 24 hours Website: Patient UK Comprehensive, free, up-to-date health information Website: UCLH cannot accept responsibility for information provided by other organisations.

30 30 Space for notes and questions

31 31

32 First published: January 2013 Last review date: January 2013 Next review date: January 2015 Leafl et code: UCLH/S&C/CD/RT/BRAIN&SPINE/2 University College London Hospitals NHS Foundation Trust Created by Medical Illustration RNTNEH Unique Code: 28935