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.
 

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

TBI is used as part of the regime for high dose treatment to prepare the body for a bone marrow transplant. The radiotherapy is used to:

• Help get rid of the existing bone marrow to make space for the transplanted marrow.
• Try and kill any malignant cells that have not been killed by the chemotherapy.
• Suppress the body’s immune system and reduce the chance of rejection of the transplant.

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 will be up to 1 week. 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.

Two weeks before the TBI treatment your child will need to visit the radiotherapy department for a TBI planning CT scan. This involves the radiographers positioning your child in the most comfortable but practical treatment position.

The treatment position will involve your child lying on their back with their arms either across the chest or resting on the stomach. Children can usually lie completely flat but taller teenagers may have to bend their knees, with support pads underneath. The staff will take several measurements and then perform the CT scan. No special preparation is required for the scan. You may go into the room while your child is being positioned. However, everyone, including parents, must wait outside the CT scanner room during the actual scan. The whole planning process takes about 30 minutes.

Once the scan is complete the radiographers will mark two specific points (also called tattoos) on your child’s pelvis. These are alignment marks to ensure each treatment is accurate. The marks are permanent and are done by placing ink on the skin and then gently scratching the surface of your skin with a fine needle.
 

TBI treatments occur twice a day. The first TBI treatment usually takes place first thing (09:00) on a Monday morning, with the second treatment at least six hours later. Subsequent treatments are twice a day. Your child will normally have a total of six or eight treatments. The transplant team and the doctors will inform you of this.

If your child is on a ward at Great Ormond Street Hospital or another hospital, transport will be arranged to and from University College Hospital in between each treatment. Your child’s named nurse will also have been given a time to attend for treatment. Your child will have been prescribed anti-sickness medication which needs to be taken approximately 30 minutes before each treatment.

Treatment involves your child lying on a special couch, in the same position as when they attended for the TBI measurements. There will be radiographers in the treatment room checking the measurements to ensure your child is in the correct position. You may go into the room while your child is being positioned.

However, everyone, including parents, must wait outside the room during the actual treatment.

Once your child is in the right position bags of Vaseline®, or “jelly bags” as we call them, are placed over the feet, between the ankles and knees and over the neck. These bags are to ensure the radiation treatment is evenly distributed throughout your child’s body.

Special measuring devices will be attached to various parts of your child’s body (over their clothes) with tape for each treatment. These small devices monitor the dose received throughout treatment. After checking your child is comfortable the radiographers will leave the treatment room.

Treatment is delivered to each side of your child’s body. Once one side has been treated, the radiographers and physicists will rotate the couch 180° and treat the other side. Treatment takes approximately ten minutes from each side. Your child will not feel anything during treatment, the radiation will not hurt. Your child will only hear a buzzing noise when the machine switches on.

The radiographers are watching your child all the time on closed circuit television monitors. You and other members of your family can watch them and speak to them via an intercom system. For younger children, parents are encouraged to chat or read stories over the intercom. If your child is uncomfortable or feels distressed at any time, the treatment can be interrupted, and the radiographers will enter the room to resolve any problems. The entire treatment process will take about 45 minutes.

During treatment we advise your child wears light, loose clothing, such as T-shirts, shorts, or track suit bottoms. Any clothes with metal fasteners must be removed.
Jewellery, watches, and glasses will also have to be removed.

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
During treatment there are usually no skin reactions. However, towards the end of treatment your child may notice that their skin may redden or darken, depending on their skin colour. Your child may get some dry peeling of the skin which may become itchy.

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 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 stop using the moisturiser. They will be referred to the radiotherapy review team for appropriate skin care.

Feeling sick

Radiotherapy for TBI can make your child feel sick. They will be prescribed regular anti-sickness medication to take before each treatment, so this is not usually a problem. However, if they are still feeling sick it is important to inform the staff looking after your child, so that further medication can be given.

Parotitis (swelling of the salivary glands)
The salivary glands often swell up soon after the treatment starts. This can be uncomfortable but can be controlled with mild painkillers.

Dry mouth
This usually occurs two to three days into treatment and can last up to three months following treatment completion. This can be helped by drinking plenty of fluids and performing regular mouth care as instructed by the nurses.

Sore Throat
A sore throat and gullet can be a problem, starting about 7-10 days after the treatment finishes. It can make eating and drinking difficult for a week or two. Painkillers will help.

Diarrhoea
Diarrhoea often occurs 10 –14 days after the treatment starts. Medicines and fluids can be given to help this. It may last for a week or two.

Hair loss
Many children may have already experienced total body hair loss due to chemotherapy. If your child has a full head of hair prior to the TBI, there will be complete hair loss about the third week after treatment. The hair usually starts to grow back about three months after treatment, the new growth often being slightly different in colour and texture.

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.

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.

Pneumonitis (inflammation of the lung tissue)
The lungs are especially sensitive to radiotherapy. In a few patients, inflammation can occur in the lungs within a few weeks of finishing treatment. This may cause shortness of breath and a cough and very rarely can be life threatening.

If this occurs it must be reported to the doctors, BMT co-ordinators, or specialist nurses immediately.

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

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.

Lung function
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 he/she has received chemotherapy as well.

Heart
Radiation to the heart can eventually cause later problems with function and/or rhythm disturbance, particularly if radiotherapy is given with certain chemotherapy drugs. This will be monitored closely in a late effects clinic.

Some treated female children show a tendency to heart failure, particularly under the stressful conditions of pregnancy and labour. Pre-pregnancy checks are essential, and it is important that the full medical history is known by the obstetrician and that obstetric care is hospital-based.

Kidneys
Both radiotherapy and chemotherapy may affect the kidneys. 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.

Fertility
TBI, alongside chemotherapy, will almost invariably cause an early menopause and increase the risk of infertility in females. It will also cause male infertility and affect the production of testosterone, the male sex hormone. Your child’s hormone levels and sexual development will be closely monitored during and after treatment by endocrinologists (doctors specialising in glands).

Decreased thyroid function
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.

Breast development
In females who have had TBI, the radiotherapy may well cause a reduction in breast development. This should occur symmetrically (both breasts will be underdeveloped). The exact effect depends on the age of your child at treatment.

Growth
The combination of chemotherapy, steroids and radiation will affect the growth of your child’s bones. There might be some underdevelopment of the spinal bones, with some loss of height. However, it is unlikely to be severe unless your child is very young.

The pituitary gland (at the base of the brain) will also be irradiated. 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 closely monitored during and after treatment by endocrinologists (doctors specialising in glands). Tests for growth hormone deficiency will be performed. With early growth hormone therapy, children should achieve their full height potential.

Early (precocious) puberty
The pituitary gland also controls puberty development. Radiotherapy to the pituitary gland 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. They will deal with any issues that arise.

Schooling and learning
It is possible for chemotherapy, radiotherapy, and long periods of hospitalisation to affect learning ability, especially when your 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.

Splenic dysfunction
If your child has received radiotherapy or proton beam therapy to the upper abdomen or lower chest there is the possibility that their spleen may have been irradiated. The spleen helps the body fight against bacterial infections. The spleen is very radiosensitive, and radiotherapy can have an impact on splenic function in the future. The higher the dose received, the higher the risk of splenic dysfunction.

Patients with a dysfunctional spleen are at an increased risk of severe, life- threatening infections such as pneumonia, septicaemia (blood poisoning) and meningitis.

If your child is at risk of splenic dysfunction their consultant will discuss this with you and what this will mean for your child and the family. Your child may need to take lifelong antibiotics, may require prophylactic vaccinations, may have to carry a card to alert health professionals to the risk of infection and be educated as to the potential risks of overseas travel and the risk of infection.

For up-to-date patient information on splenic dysfunction and a health alert card please visit the following links:

• https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1059549/UKHSA-12074-splenectomy-leaflet.pdf
• https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1059548/UKHSA-12074-splenectomy-record-card.pdf

Second malignancy
Very rarely, children who have received treatment for one particular tumour may develop another type of tumour 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.

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. 

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: 020 3447 3792

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

Leukaemia Care
t: 08088 010 444
w: www.leukaemiacare.org.uk

Blood Cancer UK
t: 0808 2080 888
w: www.bloodcancer.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.