Paediatric Series No.24 – Having total body irradiation: single fraction treatment

TBI is radiotherapy to the whole body using high energy x-rays. TBI can be used to:

• Help get rid of any existing bone marrow to make space for the transplanted cells to grow.
• Lower your child’s immune system to reduce the chance of their body rejecting the transplanted cells.

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 of 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.

Radiotherapy is the specialised treatment of cancer, and some other non-cancerous diseases, using high energy radiation beams. These can either be x-rays (also called photons), electrons or protons. X-rays and electrons are delivered from a machine called a linear accelerator whilst protons are delivered from a machine called a cyclotron. The most appropriate treatment for your child will be decided by your 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. It is rather like having an ordinary x-ray. 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 play specialists to support your child throughout their radiotherapy treatment. However, some children, particularly very young children, will require a general anaesthetic for their treatment.

Before your child starts radiotherapy planning and treatment, there will be ample opportunity to explore what radiotherapy involves for your family. You will meet the team members who spend time getting to know your needs and how best to support you 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 paediatric radiotherapy team, which includes the play specialists and paediatric radiographer, 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 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 radiotherapy department play specialists on 020 3447 3792

Several weeks before the TBI treatment is due, 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.

Any clothes with metal fasteners must be removed. Jewellery, watches and glasses will also have to be removed. The treatment position will involve your child lying on their back with their arms either across the chest or resting on the stomach. Arms may be secured with a soft bandage to maintain a reproducible position. Children can usually lie completely flat but taller teenagers may have to bend their knees, with support pads underneath. The radiographers 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 on your child’s pelvis. These are the co-ordinates for treatment and ensure treatment accuracy. The points are permanent and are done by placing ink on their skin and then gently scratching the surface of the skin with a fine needle.

The date for the single treatment TBI will be coordinated and booked between UCH and your child’s referring hospital. On the day of treatment, you and your child will be brought to the radiotherapy department at UCH. This will be organised by the Bone Marrow Transplant (BMT) staff where your child is an inpatient.

Treatment involves your child lying on a special couch, in the same position as when they attended for the TBI measurements and scan. We recommend that your child wears light, loose clothing, such as a T-shirt, shorts or track suit bottoms. Any clothes with metal fasteners must be removed. Jewellery, watches and glasses will also have to be removed.

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 must wait outside the room when treatment takes place.

Once your child is in the right position bags of Vaseline®, or “jelly bags” as we call them, are placed over their feet, between their ankles and knees and over their 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. The entire procedure, including setting up and treatment will take 2–3 hours. The treatment beam is usually on for 40–50 minutes of this total time. Your child will not feel anything during treatment. They 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 talk to them via an intercom system. Your child can choose to watch a DVD or listen to music. For younger children, parents are encouraged to chat or read stories over the intercom. If your child is uncomfortable, feels sick or feels distressed at any time, the treatment can be interrupted, and the radiographers will enter the room to help them.

There will be some side effects which will gradually appear after radiotherapy.

Skin changes

During treatment there will be no skin reaction. For a few days after treatment, you may notice that your child’s skin reddens or darkens, 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.

Feeling sick

Radiotherapy for TBI can make your child feel sick. They will be given anti-sickness medication to take before treatment, so this is not usually a problem.

Parotitis (swelling of the salivary glands)

The salivary glands often swell up soon after the treatment. This can be uncomfortable but can be controlled with mild painkillers.

Feeling tired

Radiotherapy can make patients feel tired. There might be a particularly sleepy spell starting 4–6 weeks after treatment ends which goes on for 2–6 weeks or even longer.

Diarrhoea

Diarrhoea can happen 10–14 days after the TBI. Medicines and fluids can be given to help this.

Hair loss

If your child has a full head of hair prior to TBI treatment, there will be some hair loss about three weeks after treatment. The hair usually starts to grow back about three months after treatment.

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. Cataracts usually develop five to six years after treatment. In many cases this will not have an effect on your child’s vision. However, a small number of children may require surgery to remove the cataract in the future.

Fertility

TBI treatment can increase the risk of infertility. Your child’s BMT team will discuss this with you if it relevant to your child.

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.

Second malignancy

Very rarely, children who have received TBI treatment 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.

Specialist Paediatric/TYA Radiographer
Telephone: 020 3447 3711

Radiotherapy Play Specialists
Telephone: 020 3447 3792

Radiotherapy Reception
Telephone: 020 3447 3700 / 3701

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

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.
Telephone: 020 3447 3042
Email: uclh.pals@nhs.net