What is radiotherapy?
Radiotherapy is a treatment using exact, carefully measured doses of radiation. Usually several beams of radiation are carefully and accurately directed to a specific area of the brain and/or spine.
Each beam is called a radiotherapy field; the point at which all beams meet is where the highest dose of radiotherapy is given.
Radiotherapy is painless and is similar to having an x-ray taken. The machines used are particularly powerful and produce special rays that penetrate deep within the body. The rays are able to destroy abnormal tumour cells and prevent them reforming. Radiotherapy stops the growth of cells by interfering with their normal function.
Tumour cells are usually sensitive to radiotherapy treatment, whereas normal cells are relatively insensitive and are able to repair and heal. Radiotherapy will not make your child radioactive and it is quite safe to be with others, including children, during the course of treatment.
Planning your child’s radiotherapy treatment
After diagnosis, a number of appointments will be made to plan your child’s radiotherapy. This process will take a number of weeks and will be explained to you by your consultant, nurse specialist and play specialist.
The planning process takes a number of weeks to complete because it is complex, requiring a team of physicists to accurately calculate the appropriate radiotherapy dose for your child. An information booklet explaining radiotherapy treatment in detail will be given to you on your first visit to the radiotherapy department.
Radiotherapy is given as a daily treatment, Monday to Friday, for approximately six weeks. Depending on your child’s condition and the nearness of home to hospital it may be possible for your child to be treated as an outpatient. The staff will be able to help you decide what is best for your child and the whole family.
What does radiotherapy treatment involve?
The radiotherapy treatment involves your child lying completely still on a couch. The play specialist, using toys and photographs, will help explain what is involved in the planning and treatment process and will support your child throughout.
The radiographers within the radiotherapy department are experienced in treating children and will also help your child settle into treatment.
To ensure your child remains completely still, a mask or shell will be made to help him or her do this. The masks are individually made for each child and you will have this procedure fully explained to you beforehand. Children are allowed to keep their shells once their treatment is completed.
Sometimes a general anaesthetic will be required, but usually children quickly learn what is needed from them, and once they realise there is no pain or discomfort involved they are happy to cooperate. If your child is having radiotherapy to the spine, small permanent dots (tattoos) may be made on the skin on his or her back to give the radiographers an exact reference mark to set up and deliver treatment.
No one can be in the room with your child while the treatment is being given, but there is TV screen to enable constant observation, and the treatment rooms have an intercom system, which can be used for story telling or talking to your child. Some children like to take a CD in with them or maybe a favourite toy to hold.
Positioning your child for treatment can take quite a while, but once in the correct position, the treatment only lasts approximately two to four minutes.
The treatment machine’s position may need to be changed partway through the session, depending on the areas being treated. The radiographers will return to the room after each treatment beam is delivered and move the machine and set up the next one.
The radiographers will explain to you the approximate length of time needed for the treatment of your child. This routine will continue each day for the course of your child’s treatment. You may be asked to return to the planning department for further checks during the course of treatment.
It is recognised that both you and your child may feel quite emotional, anxious or have difficulty to adjust to what is happening. This is normal. Fear of the unknown is common, so finding out as much as possible about treatment at the time will help you and your child to cope.
Side effects of radiotherapy
As with all treatments, radiotherapy has side effects. These do not always occur and vary in intensity. They can happen at any stage of treatment and can last for several weeks, sometimes months after treatment has finished. The radiographer will give you further information booklets when you make your first visit to the radiotherapy department:
Skin
The skin area being treated may become red, flaky and itchy during treatment and we advise that your child wash their skin gently using warm water and non-perfumed soap. Pat the skin dry with a soft towel. Do not rub the treatment area.
Aqueous cream may be applied to the treated skin. Do not put any other creams on without seeking advice, as some will increase the risk of skin problems. There may be colour changes with children who have dark skin, but this is not permanent. As a precaution, it is advisable that you keep your child’s head covered at all times when outside to protect the skin from the sun, even on overcast days. Your radiographers will be able to advise you on sun block.
Hair loss
This will occur after two or three weeks of treatment. If your child is having craniospinal radiotherapy (whole brain and spine) hair loss will be complete and if local, the hair loss will be to a smaller area. The doctors and radiographers will be able to advise you about this.
Your child’s hair will re‑grow, within weeks to months of finishing treatment, but new growth might not be the same texture or colour as before. It may also be thinner where a boost dose of radiotherapy has been given. Most children accept their hair loss amazingly well. The loss is often much more difficult for parents. Cutting hair beforehand can help reduce anxiety. Baseball hats and scarves have become very popular with children. Should your child wish to choose a wig, the radiotherapy department can advise you on where to obtain these.
Nausea and Vomiting
Some children may feel sick and vomit following a treatment session. This can be due to some swelling of the brain or because the radiation to the spine passes through and irritates the stomach. Your child will be prescribed regular anti-sickness medication to take an hour before treatment.
Appetite
Loss of appetite, although distressing to you as a parent is rarely a problem for your child. It is important that your child tries to eat a well balanced diet during treatment, and drinks plenty of fluids, (about eight glasses a day).
Most children experience a loss of appetite and offering food, little and often, is a good policy. This may be due to anxiety about unfamiliar surroundings or side effects of treatment. Your child will be weighed weekly and if there is significant weight loss, he or she will be referred to a dietitian who can advise you on issues of eating and drinking.
Headaches
Sometimes treatment can cause the brain to swell slightly and so your child may develop signs of raised pressure, which can include headache, nausea and double vision. This is usually for a short period of time but it is important to inform a member of staff, as a small dose of steroids may be required.
If your child has a VP shunt and is experiencing headaches it is important to seek advice form the doctor or your specialist nurse. It may be an indication of a blocked shunt.
Pre-existing Symptoms
Your child may experience a return of pre-existing symptoms, that is, symptoms that occurred before diagnosis. These may include headaches, nausea, vomiting, double vision and weakness. The build up of dead tumour cells causes this, leading to some swelling to the brain. Do not panic or worry, this often occurs and does not necessarily mean that the tumour has grown. Contact your nurse specialist or speak to your doctor if you are concerned. This reaction usually settles with steroid medication.
Tiredness
This is a common side effect of treatment and is best helped by allowing your child to get plenty of rest. Do not push him or her to do tasks if your child feels unable to complete them. Let your child set his or her own pace. Having said that, many children do not have a problem with tiredness during treatment and should be allowed to lead as normal a life as they are able.
Side effects of spinal radiotherapy
Spinal radiotherapy also has other side effects as follows:
Sore Throat
Some children experience a sore throat about two to three weeks into treatment. This is because radiation to the top of the spine irritates the throat. They may experience discomfort when eating certain foods. Some children will need medicine to assist swallowing.
Diarrhoea
Some children have loose bowel motions during their radiotherapy treatment. This is due to radiation to the lower part of the spine that irritates the bowel. If your child experiences this symptom please inform a member of staff, as they will be able to advise you about anti-diarrhoeal medication. It is important that you child maintains a good fluid intake.
Bone marrow suppression
If your child is having his whole head and spine irradiated it is likely that the bone marrow, found within the centre of in the spinal vertebrae, could be affected.
Bone marrow makes our blood cells, and it is the white blood cells that are particularly vulnerable while a child is receiving radiotherapy. These cells help with the fight against infection, and during treatment the white cell count may be reduced. You do not need to isolate your child from other people, but do let the medical staff know if he or she has been in contact with someone with chicken pox, measles or other infectious diseases.
If your child is receiving craniospinal radiotherapy weekly or twice weekly blood tests will be carried out to check their blood count.
Early delayed reactions
This group of reactions occur a few weeks to a month after finishing radiotherapy. Symptoms can include loss of appetite, sleepiness, lack of energy, as well as an increase in neurological (original) symptoms.
An MRI scan is routinely carried out six to eight weeks from the end of treatment, but if necessary a CT scan can be carried out to clarify the cause of symptoms.
Do not panic or worry. Contact your specialist nurse if you notice any of the symptoms listed. Early delayed reactions are usually treated with a short course of steroids and most of these settle with minimal treatment.
Late side effects of radiotherapy
Late side effects can occur months or years after radiotherapy has finished. They are the hardest to predict and, unfortunately, when they do occur, they are permanent. Your radiotherapy doctor will have explained the possible side effects of radiotherapy to you as part of the consent process:
Somnolence syndrome
This syndrome is described as excessive sleep, drowsiness and lethargy. The majority of children undergoing radiotherapy to the brain and/or spine will experience some degree of fatigue and tiredness. These symptoms may continue after radiotherapy has been completed and, more importantly, may occur for the first time eight to twelve weeks after radiotherapy has finished.
This may cause you concern that the treatment has failed, but in fact is a well-recognised result of temporary damage to the cells and neuronal (nerve) pathways.
Hormonal side effects
There is a structure in the brain called the pituitary gland. It produces a number of substances called hormones. These play an important role in much of the behaviour of our bodies. One of these is growth hormone, and it is this hormone that is often affected by radiotherapy waves passing through the pituitary gland. For this reason all children will be referred to the endocrine clinic in the early stages of their treatment.
Initially they are assessed and then followed‑up regularly. If their growth rate is shown to be slowing up or stopped, action can be taken to rectify the problem by administering artificial growth hormone. This will be explained to you in greater detail as or when the need arises. Growth rates may take up to two years to slow down sufficiently to require treatment.
Growth deficiency
Young children will not be as tall as they would have been as radiation to the brain affects the pituitary gland, which controls growth. Radiation to the spine will also affect the growth of the vertebrae (the bones in the spine). Your child’s growth will be regularly monitored and a growth hormone will be given if their growth is shown to be slowing or has stopped.
Fertility
Female fertility is occasionally affected due to radiation from the spinal field reaching the ovaries. The risk in boys is less because their testicles are further away from the treatment field. Sexual maturation and the onset of periods in girls may also be affected. The radiotherapy doctors will discuss this with you and your child, and your child will see an endocrinologist (specialising in hormone treatments) who will monitor these issues.
Learning
It is possible for radiotherapy to affect learning ability, especially when very young children’s brains are treated. For some children their educational abilities remain largely unchanged following their treatments. Others however do discover difficulties arising in areas where none had previously been experienced.
There may be a small but significant decline in IQ and problems in areas such as numeracy and acquiring new information and skills. These maybe mild and may not become obvious for several months or longer, after the end of treatment. If this is the case, however, support can be made available within the normal school environment.
Educational psychologists will be involved in assessing your child and with your permission, will inform your child’s teachers of potential problems that may occur. They assess and monitor educational ability and will offer help and advice when needed.
