Paediatric Series No. 7- Radiotherapy to the whole central nervous system

We want to involve you and your child in all the decisions about their care and treatment. If you decide to go ahead with treatment, by law, we must ask for your consent and will ask you to sign a consent form. This confirms that you agree to your child having the procedure and understand what it involves. Staff will explain all the risks, benefits, and possible alternatives before they ask you to sign a consent form.

If you are unsure about any aspect of your child’s proposed treatment, please do not hesitate to speak to the team looking after your child.

1. You and your child will see a clinical oncologist who will discuss treatment options with you. You and your child may also meet the paediatric/TYA clinical nurse specialist, specialist paediatric/TYA radiographer and health play specialists.
2. Your child will be consented for radiotherapy or proton beam therapy.
3. Radiotherapy/ Proton Beam treatment planning appointment - Your child will have a mask made and a planning CT scan using intravenous contrast dye if required. Some children may also require an MRI scan.
4. First treatment - Your child will start treatment 2-3 weeks after the planning scan. Each appointment will take approximately 30-40 minutes.
5. Review clinics - Your child will be reviewed once a week during treatment. All review clinics are in the radiotherapy and proton beam therapy department and are timed with your child’s treatment.
6. Treatment complete - Your child will be reviewed by their clinical oncologist 2-3 weeks after treatment has ended. This will either be at Great Ormond Street Hospital, University College Hospital or your child’s referring hospital.

Radiotherapy appointments: All take place in the Radiotherapy Department, basement floor, main UCH hospital building.

Proton Beam Therapy appointments: All take place in the Proton Beam Therapy Department, floors B3 and B4, Grafton Way Building.

Radiotherapy is the specialised treatment of cancer (and some other diseases) using high energy radiation beams. These can either be photons (also called x-rays), electrons or protons. Photons and electrons are delivered from a machine called a linear accelerator whilst protons are delivered from a machine called a cyclotron.

UCLH is one of two NHS proton beam therapy (PBT) centres in the UK, alongside The Christie in Manchester. Proton beam therapy (PBT) is an advanced form of radiotherapy. However, it is not appropriate to treat all paediatric/TYA tumours with proton beam therapy. The most appropriate treatment for your child will be decided by their clinical oncologist and discussed with you.

Radiotherapy does not hurt, and it will not make your child radioactive. They are completely safe to be around siblings, friends, family, and pregnant women. Your child will feel nothing from the treatment and the machine will not touch them. The most important thing is for your child to lie very still for treatment. Lying still can be very difficult for some children and we have health play specialists who will support your child throughout their treatment. However, some children, particularly very young children, will require a general anaesthetic for their treatment.

Treatment is given daily Monday to Friday, including Bank Holidays. A course of treatment can last up to 6 weeks. Your child’s treatment schedule will be decided by their clinical oncologist and confirmed on your first visit to the radiotherapy or proton beam therapy department.

Before beginning radiotherapy or proton beam therapy, your child’s treatment must be carefully planned. Their first visit will be to the radiotherapy or proton planning pre-treatment department. There will be plenty of opportunity to explore what radiotherapy involves for your family. You will meet the team members who will spend time getting to know your child’s needs and how best to support them, and the family, through treatment.

We have a series of short films and photo books that help to explain the different aspects of radiotherapy. This allows children and young people the opportunity to ask questions and to gain an understanding of what radiotherapy is all about. The radiotherapy paediatric team, which includes a specialist paediatric radiographer, a paediatric clinical nurse specialist and radiotherapy health play specialists, will go through step by step what to expect with treatment specific to your child.

Whenever possible, and especially with younger children, we plan separate visits to the mould room, CT scanner and treatment machine in advance of the actual treatment. This is a hands-on experience and questions are encouraged. This ensures your child is comfortable and familiar with what is going to happen.

For more information on preparing your child for radiotherapy treatment you may contact the health play specialists directly on 020 3447 3792.

Radiotherapy for children is an individualised treatment, and any side effects will vary depending on the type of radiotherapy chosen for your child and the radiotherapy dose given. Your child’s clinical oncologist and specialist radiographer will discuss with you how the radiotherapy will affect your child in more detail. However, there will still be plenty of opportunity to talk about anything that you feel needs further discussion.

There are side effects that start during treatment. They gradually get worse during treatment and for a couple of weeks afterwards and then get better after several weeks. Late effects can develop months or years after treatment has ended.

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 main side effects that occur during radiotherapy treatment are:

Skin changes

The skin in the area being treated will gradually change colour. Your child’s skin will gradually become pink /red or darker, depending on their skin colour. Your child may get some dry peeling of the skin in the treatment area, which may become itchy. Some children may experience peeling of the skin behind the ear, or at the back of the neck/head, which can be sore. If your child’s skin peels and is sore they will be referred to the radiotherapy review team for appropriate skin care.

During treatment we advise that your child wash normally using warm water and the soap products they would normally use. Gently pat the skin dry with a soft towel. When washing their hair, use warm water and a non-medicated shampoo. Dry their hair using a soft towel, a hair dryer on a cool setting or leave to dry naturally. Brush and comb their hair gently using a soft brush or a wide rounded-toothed comb.

Radiotherapy skin reactions cannot be prevented, but to minimise any skin irritation we recommend using a moisturiser of your choice. Use the moisturiser frequently and gently smooth it on to your child’s skin until it is absorbed. You do not need to wipe the moisturiser off before treatment, but please do not apply moisturiser immediately before their treatment. If your child does not use a moisturiser, speak to the radiographers and they will be able to suggest a few options.

If your child’s skin becomes irritated or peels, stop using the moisturiser and ask the radiographers for more advice.

Avoid exposing the skin in the treatment area to strong sunlight or extreme temperature changes during treatment. Always ensure your child wears a hat/cap to protect their head and clothing to protect their torso if they are outside during strong sunlight. After radiotherapy, the skin in the treatment area is always going to be more sensitive to the sun, so it needs to be protected with a cap/hat and clothing, and we recommend that you always use a high protection sun cream, Factor 50 or more, on your child’s skin in strong sunlight.

Hair loss

Some children 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. Their 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.

Feeling sick

Some children may feel sick and vomit occasionally during treatment. 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. Your child will be prescribed regular anti-sickness medication to take during treatment. However, if they are still feeling sick, please tell us as we can refer them for further medication.

Headaches

Radiotherapy can cause the treated area in the head to swell slightly and so your child may develop signs 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 inform a member of staff if your child is experiencing such symptoms as a small dose of steroids, which can reduce the swelling, may be required.

If your child has a VP shunt (a tube draining fluid from the brain to the heart or gut) and is experiencing headaches, it is important to tell us. It may be an indication of a blocked shunt.

Sore throat

Your child may begin to experience a sore throat about two to three weeks into radiotherapy. This is because radiation to the top of the spine irritates the throat. They may experience discomfort when eating certain foods. Some children may require oral medication to assist with swallowing.

Effects on the voice

Your child’s voice may become sore and occasionally hoarse. Some children may require oral medication to ease any discomfort. When the treatment has finished it may be a few weeks before their voice starts to recover.

Diarrhoea

Mild diarrhoea may occur but is unusual. This is due to the radiation irritating the bowel. Your child may also experience wind pains and/or cramping sensations. If the diarrhoea persists or becomes severe your child may be prescribed regular anti-diarrhoeal medication. It is important that your child maintains a good fluid intake if they have diarrhoea.

Effects on the bladder

During pelvic radiotherapy it is possible that your child may experience a burning sensation on passing urine and an increase in the need to pass urine. This is due to the radiotherapy irritating the bladder and is called “radiation cystitis”. If your child experiences such symptoms, please tell us. Your child will be sent for a urine test to check that it is radiation cystitis and not an infection. It may help if your child increases their fluid intake.

Eating and drinking

It is important that your child tries to eat a well-balanced diet and drink plenty of fluids during treatment. If your child has a sore throat due to treatment, they may lose their appetite or find swallowing food painful. They may require oral medication to assist with swallowing. Your child will be weighed weekly by the team and if there is any significant weight loss your child will be referred to the dietitian for helpful advice about nutrition. It is important that your child drinks plenty of fluids, between one to two litres a day. This can include water, squash, or hot drinks. This will vary depending upon their individual needs. You will be advised accordingly by the team members.

Tiredness

Tiredness is a very common side effect of treatment. Your child may feel more tired and have less energy than usual, both during and after treatment. Do not worry, this is normal. The tiredness is usually at its worst near the end of treatment and for several weeks afterwards. Allow your child to do as much as they feel they can and rest when they need to. However, gentle exercise has been found to improve energy levels in patients. Some children do not have a problem with tiredness and should be encouraged to lead a normal life as much as possible. Please tell us if your child is struggling with tiredness. They can be referred to physiotherapy and occupational therapy for practical tips and advice.

Somnolence syndrome

Somnolence syndrome is a rare complication of treatment. It is an excessive tiredness. Your child may feel that they have no energy and sleep nearly all the time. It usually starts 4-6 weeks after treatment has finished and can last for several weeks. Please contact your child’s specialist nurse or clinical team if they are experiencing excessive tiredness.

Pre-existing symptoms

Your child may experience an increase in pre-existing neurological symptoms (the symptoms that occurred before diagnosis). These include headaches, nausea, vomiting, double vision, and weakness. These side effects can be very worrying at the time. Contact your child’s specialist nurse or medical team if you are worried. These reactions are usually treated with steroids and most of them go away with minimal treatment. It is important for your child’s doctors to be aware if they experience these reactions so they can monitor their progress.

Blood and bone marrow system

Treating the spine may affect the bone marrow. Bone marrow makes blood cells and is found in the centre of bones such as the spinal bones. The white blood cells (which fight infection) and platelets (which are important for blood clotting) might be affected. Your child’s blood count will be monitored regularly during radiotherapy. If your child requires a blood transfusion, this will be arranged with the paediatric/teenage oncology teams.

Late side effects incurred during treatment can appear to develop months or years after radiotherapy has finished. They are the hardest to accurately predict and, unfortunately, when they do occur, they are usually permanent.

These may include:

Growth

Radiation to the brain affects the pituitary gland (which controls growth). Radiation to the spine affects the growth and strength of the vertebrae (the bones of the spine). There might be some under development of these bones, with some loss of height. Your child will be regularly monitored from diagnosis by an endocrinologist in a growth clinic, and growth hormone will be given if their growth rate slows, and a deficiency of growth hormone is confirmed on testing. With early growth hormone therapy, children should achieve their full height potential. In some cases, growth hormone may be required in adult life.

Early (precocious) puberty

The pituitary gland also controls puberty development. The presence of a brain tumour and radiotherapy to the brain may make puberty start and finish earlier, limiting the time available for growth. Endocrinologists (doctors specialising in glands) will closely monitor your child during and after treatment.

Decreased thyroid function

Thyroid gland function can be affected directly by the radiotherapy or by thyroid hormone from the pituitary gland. The thyroid gland, in the neck, may become underactive, overactive (very rarely), or tend to form lumps many years after treatment has finished. Your child will be monitored through regular blood tests and if a dysfunction is detected, it can easily be treated.

Hearing problems

Swelling due to the radiotherapy can cause fluid to accumulate in the ear, if the ears are in, or near, the area being treated. This may cause your child to experience some temporary hearing difficulties. Some children may lose the ability to hear high tones, particularly after receiving certain chemotherapy drugs. Your child’s hearing will be regularly monitored following treatment

Fertility

Girls’ fertility is rarely affected from radiation to the spine field scattering to the ovaries. The risk in boys is even smaller as their testicles are further away from the treatment field. Post pubertal boys receiving chemotherapy and radiotherapy should be referred to the endocrinologists for a discussion about sperm banking. Sexual maturation is less usually affected except in girls, who may experience a delay or arrest in puberty or the onset of periods. This is much more likely after chemotherapy. The doctors will discuss this with you and your child.

Schooling and learning

It is possible for the tumour, surgery, chemotherapy, and radiotherapy to affect learning ability, especially when the child is very young (up to seven years of age). There may be a small but significant decline in intelligence points (IQ) and weaknesses in number skills, spelling and in the processing speed of acquiring new information and skills. Your child will be closely assessed by clinical psychologists and his/her teachers should be informed about the potential problems that may occur.

Most children are educated in mainstream schools, but some may require one-to-one teaching to address a special need and prevent a further decline in IQ. This will require close liaison between yourselves as parents, the psychologists, the hospital, the specialist nurse, and the school. Most children achieve independent and fulfilled adult lives.

Cataracts

The development of mistiness of the lenses of the eyes 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 child’s vision. However, in a small number of children they may require surgery to remove the cataract in later years. Fortunately, cataract surgery today is very straightforward and successful.

Cavernomas

Following radiotherapy to the brain, some children 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.

Stroke

Radiotherapy may contribute to the hardening of the arteries of the brain which may increase your child’s risk of stroke in later life. It is therefore very important that your child tries try to maintain a healthy diet and normal weight, and to avoid smoking to lessen this risk in the future.

Lung function

It is possible for lung function to be affected by the radiotherapy treatment. This can take two forms: six to twelve weeks after radiotherapy your child may experience some shortness of breath and dry cough. This may be due to radiation pneumonitis, which may be treated with a short course of steroids and usually recovers completely. This occurs in a small proportion of children only. In some children symptoms may never occur. There may be some long-term effect on your child’s breathing. This is very unusual, but if it occurs it tends to be noticeable on moderate to severe exercise only.

After treatment your child will have regular lung function checks in a dedicated follow-up service. It is very important that any child who has received this treatment never smokes, especially if they have received chemotherapy as well.

Heart

The heart is also in the treatment field when the spine is treated. Radiation to the heart can eventually cause later problems with function and/or rhythm disturbance, particularly if radiotherapy is given with chemotherapy. This will be monitored closely in a late effects clinic. Some treated females have an increased risk of heart failure in later life, particularly under the stressful conditions of pregnancy and labour.

Pre-pregnancy checks are essential, and, in the case of pregnancy, it is important that a full medical history is known by the obstetrician and that obstetric care is hospital-based.

Kidneys

Both radiotherapy and chemotherapy 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 child’s kidney function will be closely monitored at follow-up.

Low bone density (osteopaenia)

Low bone density can occur for several reasons. These can include immobilisation, poor nutrition, low calcium, steroid therapy as well as radiotherapy to the skeleton. Weight bearing exercise, eating a healthy diet and timely hormone replacement therapy can all prevent osteopaenia occurring. Your child will be screened for osteopaenia in the endocrine clinic as he/she grows up.

Second malignancy

Very rarely, children 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 with you if it is relevant to your child. Other factors such as smoking and excess sun exposure may also lead to an increased cancer risk in later life. It is therefore very important that any child who has received this treatment never smokes and always takes precautions against excess sun exposure.

This page deals with the physical aspects of your child’s treatment, but their emotional wellbeing and that of the family is just as important. Having treatment can be deeply distressing for your child and family. Within the radiotherapy department there will be access and support from the paediatric clinical nurse specialist, the specialist paediatric radiographer, health play specialists, treatment radiographers and the radiotherapy review team.

However, if your child requires further medical or emotional support, they can be referred to a variety of health professionals specialising in children’s and young people’s needs.

Once your child has finished radiotherapy treatment you will be given a follow-up appointment to see the radiotherapy doctors in two to three weeks’ time. This will either be at Great Ormond Street Hospital, University College Hospital or your child’s referring hospital.

Any side effects your child is experiencing will continue for some weeks after treatment has finished. The side effects may become worse before they start to improve. This can be very worrying for families. We expect the side effects to worsen, but please be assured they will gradually settle. Please continue to follow the skin care advice you have been given by the radiotherapy team until your child’s skin returns to normal.

Once their skin has fully healed, they can use normal skin care products again.

If you are worried about your child’s skin or any other side effects after their radiotherapy treatment, please call the paediatric clinical nurse specialist or paediatric specialist radiographer for advice. Please see the contact numbers at the bottom of this page.

My child’s keyworker is:

Paediatric/TYA Clinical Nurse Specialist
t: 07929 079599

Paediatric/TYA Specialist Therapeutic Radiographer
t: 07817 941313

Radiotherapy Health Play Specialists
t: 07929 834430/ 07929 834428
e: uclh.radiotherapyplayspecialists@nhs.net

Proton Beam Therapy Reception
t: 020 3456 8000/8001

Proton Beam Therapy Review Team (via Proton Beam Therapy Reception)
t: 020 3456 8000/8001

Radiotherapy Reception
t: 020 3447 3700/3701

Radiotherapy Review Team (via Radiotherapy Reception)
t: 020 3447 3700/3701

T11 North Ward
t: 020 3447 1102

T11 North Nurse In Charge (available 24 hours)
t: 07939 788096 

T12 North Ward
t: 020 3447 1202

T12 North Nurse In Charge (available 24 hours)
t: 07908 468555

TYA Ambulatory Care (Monday to Friday, 8am to 6.30pm)
t: 020 3447 1837

TYA Ambulatory Care (available 24 hours)
t: 020 3456 7111

If you have any concerns that you would like to discuss in confidence, please contact our PALS (Patient Advice and Liaison Service) for information and advice.
t: 020 3447 3042
e: uclh.pals@nhs.net

The Brain Tumour Charity
t: 0808 800 0004
w: www.thebraintumourcharity.org

Brains Trust
t: 01983 292 405
e: hello@brainstrust.org.uk
w: www.brainstrust.org.uk

British Brain and Spine Foundation
t: 0808 808 1000
w: www.brainandspine.org.uk

Young Lives vs Cancer (formerly CLIC Sargent)
t: 0300 330 0803
w: www.younglivesvscancer.org.uk

Teenage Cancer Trust
t: 020 7612 0370
e: hello@teenagecancertrust.org
w: www.teenagecancertrust.org

Teens Unite
t: 01992 440091
e: info@teensunite.org
w: teensunite.org

Children With Cancer UK
t: 0800 222 9000
e: info@childrenwithcancer.org.uk
w: www.childrenwithcancer.org.uk

Children’s Cancer and Leukaemia Group (CCLG)
e: info@cclg.org.uk
w: www.cclg.org.uk

Macmillan Cancer Support
t: 0808 808 0000
e: cancerline@macmillan.org.uk
w: www.macmillan.org.uk

Cancer Research UK
t: 0808 800 4040
w: www.cancerresearchuk.org

Carers UK
t: 0808 808 7777
e: adviceline@carersuk.org
w: www.carersuk.org

NHS Choices
w: www.nhs.uk

UCLH cannot accept responsibility for information provided by other organisations.