Paediatric Series No 02 - Radiotherapy to the head, mouth and neck

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 speak to the team looking after your child.

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

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.

University College Hospital Trust 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 part of the head, mouth and neck being treated, 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 which can be very 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.

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’s skin becomes irritated or peels, stop using the moisturiser. They will be referred to the radiotherapy review team for appropriate skin care.

If your child does not use a moisturiser, speak to the radiographers and they will be able to suggest a few options.

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 neck if they are outside during strong sunlight. After treatment has finished, we would always recommend that your child use a high protection sun cream, Factor 50 or more, and wear a hat/cap in strong sunlight.

Effects on the mouth
The cells lining the insides of the mouth and neck are very sensitive to radiation. Common problems your child may experience during treatment include:

• Soreness due to inflammation of the tissues.
• Dryness of the mouth due to radiation effects on the salivary glands. This also leads to taste changes and difficulty in swallowing.
• Infections due to lack of saliva. This can be seen as white patches on the inner surface of the cheeks or covering the tongue (oral thrush).
• The production of thick saliva or mucus which may lead to nausea or vomiting.

Patients may be asked by the clinical team to use a specific solution as mouthwash throughout their treatment, details of which will be provided by the team. Do not hesitate to ask for help and further advice from your child’s clinical team.

Eating and drinking
It is important that your child eats a well-balanced diet and drinks plenty of fluids during their radiotherapy treatment. If your child is having treatment to the mouth and neck, they may have difficulty chewing and swallowing food, as the inside of their mouth and throat may be sore. Some children may require oral medication to assist with swallowing. Your child will need to see the paediatric dietitian and the speech and language therapist. Both will advise you and your child about swallowing and nutrition issues.

Your child may also experience a change in taste which will make eating and drinking less enjoyable, as well as reduce their appetite. Your child will be weighed weekly by the team and if there is a significant weight loss your child will be referred to the dietitian.

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.

Your child may require a feeding tube to help support their nutrition during treatment. The feeding tube will help them consume enough fluids and liquid food when it becomes too difficult to swallow. This will be discussed with you if it relevant to your child.

Your child’s appetite may be suppressed for several weeks or months from the end of treatment, but they will be closely monitored by the medical team.

Sore throat
Your child may experience a mild discomfort when swallowing food as the radiotherapy irritates the gullet (oesophagus). In most cases, children are still able to eat and drink normally, but some may require oral medication to ease any discomfort.

Effects on the voice
If your child is having radiotherapy to the throat their voice may become hoarse. This can worsen and some children may temporarily lose their voice. It is advisable to allow your child to rest their voice as much as possible during treatment. Do not allow your child to strain their voice to make themselves heard. When treatment has finished it may be a few weeks before their voice starts to recover, and in some cases, it may always remain husky. If your child’s voice does not improve, they will be referred to the speech and language therapist for voice therapy.

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.

Feeling sick
Occasionally, some children may feel sick and vomit because of the radiotherapy treatment. This can be well controlled with anti-sickness medication which will be prescribed if your child experiences such symptoms.

Hair loss
If there is hair in the area being treated this will fall out. Hair loss in the area being treated usually occurs approximately two to three weeks into treatment. Hair loss may be temporary or permanent. Please ask your child’s clinical team if the lost hair is likely to regrow.

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.

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:

Skin changes
Radiotherapy may result in scarring of the skin and its underlying structures. This gradually turns soft, supple skin hard and “woody”. It is more likely to happen if your child has previously undergone surgery or chemotherapy. Good skin care, the use of water-based moisturisers and sun avoidance can minimise these side effects.

Loss of taste sensation
Loss of taste can be a distressing symptom, but this usually recovers within three to four months after the end of treatment. However, a small percentage of children may have a permanent loss of taste or altered taste perception.

Dental decay
Radiation treatment may cause tooth decay and discoloration due to a reduction in blood supply to the teeth. Treatment may also cause gum shrinkage causing further dental problems. If your child requires dental treatment, be sure to inform the dentist that they have had radiotherapy to the mouth. Regular dental checks are important to minimise these problems.

Dry mouth
Damage to the salivary glands can lead to reduced saliva production. Some children may experience the production of thick saliva/mucus which can be distressing, as it can lead to nausea and vomiting. Saliva production improves over the months following treatment, but it may not return to normal entirely. There are artificial saliva replacements available from the chemist. Please ask your child’s clinical team or GP about their use.

Oral infections
Following treatment your child may be more susceptible to fungal infections such as thrush within the mouth due to a lack of saliva. This will be made worse by poor dental hygiene. You or your child may notice white areas on their tongue and/or inside their cheeks, and mouth ulcers. Please contact your child’s GP, who can prescribe a course of antibiotics.

Difficulty opening the mouth (called trismus)
Your child may find it difficult to open their mouth wide and comfortably if they have had treatment to the jaw, tongue, or tonsils. This is due to the treatment affecting the large muscles that open the mouth.

The muscles can become stiff (fibrosed) if they are in the treatment area. This is called trismus. This may appear 3-6 months following radiotherapy. The speech and language therapist will provide your child with jaw stretching exercises to help reduce or prevent trismus.

Decreased thyroid function
Radiotherapy to the neck can affect your child’s thyroid gland. The thyroid gland may become underactive, overactive (very rarely), or tend to form lumps many years after treatment has finished. This reduces the level of thyroid hormone that regulates the body’s metabolism. Your child will be monitored through regular blood tests and if a dysfunction is detected, it can easily be treated.

Swelling
Swelling of the neck, especially under your child’s chin, may persist for several weeks or even months after radiotherapy. It is often worse in the morning and feels like a lump under the chin. This condition is known as “dewlap” and is a recognised side effect of treatment.

Although “dewlap” rarely causes any problems, many parents are worried that the swelling might represent a recurrence. If you are anxious, contact your child’s specialist nurse or doctor. This condition usually resolves six months to a year after treatment.

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 child’s vision.

However, in a small number of children they may require surgery to remove the cataract. Following treatment, your child will have regular checks. Fortunately, cataract surgery today is very straightforward and successful.

Growth
Radiation can affect the growth of the vertebral bodies (neck bones) in the radiation field. There might be some underdevelopment of these, with some loss of height.
However, it is unlikely to be severe unless your child is very young.

For some tumours we have to include the pituitary gland (at the base of the brain). This means that it may not produce enough growth hormone as your child develops, particularly in puberty. Your child’s growth and puberty will be monitored closely during and after treatment by endocrinologists (doctors specialising in glands).

Bone and muscle growth
Radiation will also affect the development of bone and muscles in the area treated. In a child who is still growing this may mean that the bones and muscle in the treated area will be smaller and so look different.

L’hermitte’s Syndrome
L’hermitte’s Syndrome, also called transient radiation myelopathy, can occur if your child’s spinal cord is in or near the area being treated. The radiation can cause a temporary inflammation of the membrane surrounding the spinal cord. Within four to six weeks after the end of treatment your child may experience tingling or “pins and needles” in their hands and feet. Very occasionally, L’hermitte’s Syndrome can cause jerking of their limbs. This is not a sign of serious nerve damage and recovers without treatment. These symptoms can take four to six months to settle.

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.

Following radiotherapy to the mouth, especially if saliva production has been reduced, it is essential that your child’s teeth are cleaned regularly and that regular dental check-ups are performed.

The dentist must be told about the radiotherapy treatment. This is important if your child ever needs teeth removed.

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 local 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.

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 end of this page. 

Paediatric/TYA Clinical Nurse Specialist t: 07929 079599

Paediatric/TYA Specialist Therapeutic Radiographer t: 07817 941313

Radiotherapy Health Play Specialists
t: 020 3447 3792

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