University College Hospital

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1 University College Hospital Information for parents of children and young people having radioactive iodine ( 131 I) treatment Radiotherapy Department Paediatric information series No.13

2 If you would like this leaflet in another language or format, or require the services of an interpreter, contact us on We will do our best to meet your needs. Contents Introduction 3 What is radioactive iodine ( 131 I) treatment? 3 Asking for consent 4 Preparation for children and young people 4 Before your child s admission 5 What happens when my child comes into hospital for 131 I treatment? 7 Why does my child need to stay in a protected room? 9 What can my child do during treatment? 10 What can I do during my child s treatment? 12 Can my child have visitors? 13 What is life like on T11? 13 When can my child go home? 14 What side effects will my child experience? 16 What happens after treatment? 16 When will I know how well the treatment has worked? 16 Is any other support available? 17 Glossary 17 Radiation restrictions 19 Any further questions 20 Other useful contacts 21 Space for notes and questions 23 How to find us 24 2

3 Introduction This booklet has been written for parents, carers and family members who are acting as comforters and carers for children and young people undergoing radioactive iodine ( 131 I) treatment. We understand this is a worrying time for children and their families and you may feel that you have been given lots of information about the treatment. However, we hope this booklet answers any remaining concerns you may have. If you still have any questions after reading this, please ask. We are here to help. What is radioactive iodine ( 131 I) treatment? Radioactive iodine is a form of radiotherapy treatment, called molecular radiotherapy. It has been used to treat thyroid cancer for over 50 years and is extremely safe. The treatment is a known, targeted method of destroying any thyroid tissue or cancer that may have escaped surgical removal. The drug is selectively taken up by cells of thyroid origin and, when given in high doses, destroys them with radiation. The treatment is painless and has very few side effects. Your child has been prescribed 131 I as an effective treatment for his/her thyroid cancer and may be receiving an ablation or therapy dose. The medical team will discuss your child s individual treatment plan with you. Your child will be required to stay in hospital for several days after the treatment. Sometimes it is possible to go home at the end of the week but occasionally a longer stay is necessary. The discharge date depends on how quickly the 131 I is absorbed by the cancer cells and then excreted from the body. 3

4 Asking for consent We want to involve you and your child in all the decisions about his/her 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 a senior member of staff again. Preparation for children and young people Before your child starts his/her 131 I treatment, you and he/she will meet with the consultant clinical oncologist who will discuss the rationale for treatment and what to expect. It will also give you a chance to meet the members of the medical team who will be treating your child and give you an opportunity to ask any questions you may have, before signing a consent form for the intended treatment for your child. You and your child will also meet the specialist isotope radiographers who will coordinate your child s care and treatment. We will take you and your child to the paediatric ward (T11North) to meet the nursing staff and see the special, protected rooms in which he/she will be staying for the duration of his/her treatment. This will give you and your child a better understanding of what to expect and ensure your child is comfortable and familiar with what is going on (Fig 1.) 4

5 Fig.1 Paediatric ward (T11) at UCLH Play specialists will also be contacted in advance to ensure toys and activities which your child enjoys are available in the room for the duration of your child s stay. Before your child s admission Following surgery to remove your child s thyroid, he/she will have been prescribed thyroid hormone tablets. Before your child is admitted they may be required either to stop certain medications or have injections to ensure the 131 I treatment is effective. For the majority of patients, injections of rhtsh (thyrotropin alfa) are given. These allow your child to carry on taking their thyroid hormone medication throughout treatment and are carried out as outpatient appointments prior to the administration of 131 I. Not all patients are suitable, or able to have these injections, in which case your child will need to stop his/her Levothyroxine Sodium (T4) four weeks before admission or his/her Liothyronine (T3) ten days before admission. 5

6 Your child may feel tired or weak when not taking the tablets. This is normal and the symptoms will disappear once her/she starts taking the tablets again, which is normally on discharge from hospital. The doctor will advise which method is preferred for your child. If your child is taking any other tablets they should carry on doing so, as prescribed. Please bring a supply of medications with you on admission, and show them to the doctor who examines your child. For two weeks before coming into hospital it is also recommended that your child avoids iodine-rich foods. Eating these foods may reduce the effectiveness of the treatment. We advise that your child: Does not eat fish, kelp and all seafood. Does not take vitamin supplements which contain iodine or cod liver oil. Does not take cough medicine, iodised table salt or sea salt. Does not eat foods artificially coloured pink or red such as canned and glacé cherries, canned strawberries, spam and salami. These contain the colouring material E127 which is rich in iodine. Certain CT scans use iodine based contrast. If your child is having a CT scan prior to treatment please inform your doctor or the radiographer booking your treatment. If your child has had a CT scan with iodine-based contrast recently, his/her treatment will be delayed until three months have elapsed. 6

7 As with all procedures involving radiation, your child should not undergo treatment if they are pregnant or breastfeeding. You, or your child, must tell the staff if there is any chance they may be pregnant. All females over the age of twelve will have a urine pregnancy test performed, regardless of whether or not you, or they, think there may be any chance of pregnancy. Female patients will be advised not to become pregnant for six months following treatment. Adolescent males who have received treatment will be advised not to father a child for at least four months after treatment. The Specialist Isotope Radiographers will discuss any issues around sex, contraception and intimacy with your child if it is appropriate. What happens when my child comes into hospital for 131 I treatment? Your child will be admitted to the paediatric ward on the 11 th floor of the main UCH building (T11N), (or to the teenage floor, T12N), on the day of his/her treatment and allocated a protected side room with en-suite shower and toilet (Fig. 2, Fig.3) Fig.2 Protected room 7

8 Fig.3 Protected room There is available space outside the room, to allow you to stay in hospital with your child for the duration of his/her treatment. (Fig.4). Fig.4 Parent cubicle. Before treatment, your child will have a blood test to measure his/her blood cell and thyroid-stimulating hormone levels. The 131 I treatment is routinely given orally as a small capsule and your child will be given some water, juice or yoghurt to help them swallow it. Please let us know at the earliest opportunity if they are unable to swallow capsules as, in this case, we would administer the treatment in liquid form instead. The 131 I will enter your child s bloodstream and be taken up by any remaining thyroid tissue or thyroid cancer cells. Most of the remaining 131 I will be eliminated through the urine over the following days whilst he/she is in hospital. 8

9 The 131 I can also be excreted in other bodily substances such as saliva, vomit, faeces, sweat and oils secreted by the skin. Medication will be prescribed which will reduce the likelihood of any nausea or and vomiting after the treatment has been administered. A whole body scan will be organised for your child in the nuclear medicine department after his/her 131 I treatment. You will be given the appointment time when your child arrives in hospital, if not before. The scan is a way of producing a map to see where the 131 I is in his/her body, and helps the doctors assess the progress of treatment. A porter will collect you and your child from their room and take you both directly to the nuclear medicine department for their scan. If your child prefers, they may watch a DVD during their scan or play a CD. The play specialist can advise and support your child through the scans. Why does my child need to stay in a protected room? The radiation from 131 I is beneficial to your child as it is treating his/her cancer, but it could be dangerous to other people. Your child will therefore stay in a protected room. Stringent regulations require patients receiving designated quantities of radioactive drugs to stay in hospital until a specified amount of the drugs have been eliminated from the body. The regulations also stipulate restrictions on these patients while they are in hospital. Your child must not leave the protected room and must only use the shower and toilet in the en-suite. The en-suite shower and toilet are for your child s use only. Your child must wash and dry his/her hands using the paper towels in the room and discard of them in the yellow bin bags. 9

10 One of the two doors to the suite must always be closed (Fig. 5) Fig 5. Lead lined door All nursing staff and visitors entering the room must wear protective shoe covers, aprons and gloves. Anyone entering the room must wear a radiation monitor and record their measurements. If your child feels sick, please tell the nursing staff immediately. If he/she is sick, he/she should use the wax cartons provided or the toilet if possible. If your child wears nappies or pull-ups, please talk to the Specialist Isotope Radiographers who will advise on their disposal during your child s admission. Please encourage male children to sit rather than stand, whilst urinating, to minimise the risk of contamination in their bathroom. Double flushing the toilet is also advised for all patients. What can my child do during treatment? Your child will remain in the protected room most of the time during their treatment. Exceptions include going to the nuclear medicine department for scans and, in cases of medical necessity, being moved to another area of the hospital. Children tend to feel well during treatment however and can do many activities. 10

11 We will ask you and your child what their particular interests are and the hospital s play specialists will try to provide activities and toys which your child particularly enjoys. This means that they will not need to bring items from home. He/she will be able to play video games, watch TV and/or DVDs or play with the toys which are all provided in the room (Fig.6). Fig.6 Activities and DVDs There is also a telephone so he/she can speak to friends and family members who might not be able to visit. Your child can bring his/her own books and toys but any items in the room may become contaminated with radiation and may need to be kept in storage in the hospital until they are safe to be returned. We therefore advise your child brings as little as possible and only those items he/she will not need to take home immediately. Old and comfortable clothes are best for your child to wear while he/she is having treatment and hard surfaced toys are recommended as these can often be decontaminated for him/her to take home. 11

12 What can I do during my child s treatment? We recommend that one person stays in hospital with your child throughout their hospital stay to assist him/her with taking medications, going to the bathroom, eating and any other necessary activities. You may also be asked to take some radiation measurements of him/her during the course of the week. There are legal limits which regulate the amount of radiation exposure individuals can receive. You will therefore be given a separate information leaflet called Unsealed source radiotherapy: Information for comforters and carers. It is important that we regulate the amount of exposure to you. Following some individual training, you will be asked to sign a designated comforter and carer consent form. By signing the consent form, you will agree to receive a higher radiation dose than normally permitted and can therefore spend as much time with your child as they require. To minimise and record your personal radiation exposure you must: Wear protective shoe covers, aprons and gloves in your child s room at all times. Wear a radiation monitor at all times. The time you enter the room and dose monitor reading at this time must be recorded. You must then also record your time out and dose monitor reading when leaving the room. A record book will be provided for this. Minimise the time you spend with your child and maximise the distance between you and your child, as radiation dose levels rapidly increase with time and decrease with distance. Stay behind the mobile lead shields placed round your child s bed as much as possible. 12

13 Whilst your child is sleeping, playing or resting, we will advise you to stay in the parent cubicle. As a comforter and carer, you will not personally be radioactive. You may wish to swap with other family members and return home to visit other children. You may also wish to bring with you your mobile phone, tablet, laptop or Kindle during your child s stay. However these will need to remain in the parent area at all times. There is guest Wi-Fi available for visitors of UCLH. We cannot emphasise enough how important it is for you to tell us if your child has any accident, particularly if any of his/her urine or vomit is spilt while in hospital. It can be dealt with properly if we know about it, but may be harmful to yourself and others if you fail to tell us. Can my child have visitors? Adult relatives, who are not pregnant, are allowed to visit twenty four hours after 131 I administration. Adults may visit for up to an hour and must sit outside your child s room behind a lead screen. All visitors must report to the nurse s station on arrival. Visitors under 18 and pregnant or breastfeeding women cannot visit under any circumstances. What is life like on T11N? T11N is a paediatric oncology ward, predominantly catering for children aged 0 to 12 years old. The protected side rooms are reserved for children and adolescents of all ages admitted for radioactive treatments. On arrival on the ward you and your child will be greeted by a nurse who will check your child s details, book him/her in, explain the ward routine and show you what facilities are available. Your child will also be assigned a nurse who will be 13

14 responsible for his/her care throughout his/her stay on the ward. Meals will be brought to your child in his/her room three times a day. These will be served on paper plates with plastic cutlery. If your child does not receive a meal for whatever reason, please ring the nurses station and they will provide him/her with one. Please also let us know if your child has any special dietary needs. A microwave and kettle are also available in the parents room on T11N alongside tea, coffee, juices, cereals and some other food items. Food from outside the department is also permitted and a wide range of shops and food outlets can be found a short distance from UCH. Any food bought externally must be eaten at your own risk, as UCH cannot guarantee the food has been through the same stringent catering quality controls as its own, which are designed to minimise food poisoning risks. There is a fridge provided in your child s room where you may wish to store food and drink. A room at Pauls House, UCH s CLIC Sargent Home from Home accommodation facility, may also be booked for you and any other family members who wish to provide additional support throughout your child s treatment. Please speak to your Specialist Isotope Radiographer about information regarding the booking and the available facilities at Pauls House. When can my child go home? You should plan for your child to be in hospital for up to a week, although a longer stay is sometimes necessary. When your child can go home depends on his/her radiation levels following treatment. Depending on your child s radiation levels, he/she may need to avoid being in close contact with people for prolonged periods, particularly other children and pregnant women. Before your child is discharged from the hospital, we will give you a special 14

15 yellow instruction card. You must carry this card with you at all times. The card gives details of the precautions you must continue to take after treatment and how long your child will need to wait before until he/she return to normal activities. The card should be presented if your child attends another healthcare setting during the restriction period. If you plan to fly between countries after treatment, please tell the specialist isotope radiographers. Your child should not fly until they have reached a lower level as determined by the radiotherapy medical physics team. It may take several days to reach this level. This is particularly relevant if your child is coming for treatment from overseas. It is also possible that some of your child s belongings, particularly clothing and washing things, may become radioactive. The radiotherapy physics team will scan your child s belongings and let you know if there are any items they need to store. These may need to be kept for up to six months. If you or your child would like them back, please let us know and we can contact you when they are ready to be collected. The physics team will also monitor your child s radiation levels throughout his/her treatment and only when they are low enough will he/she be allowed home. Typically, a child will require a week at home before he/she can return to school. You must therefore not arrange any important engagements for at least two weeks after your child s admission to hospital. Following discharge, the radiotherapy physics team can monitor your child to review and update any restriction recommendations and restriction periods if you return to UCH. If you live some distance from UCH it may be possible for this monitoring to take place at another hospital closer to home (with Nuclear Medicine facilities) with prior arrangement. 15

16 Please see the radiation restrictions on pages 19 and 20 for further information. What side effects will my child experience? Usually there are very few side effects from 131 I treatment. However your child may experience soreness in the neck, dryness and discomfort in the mouth and/or swelling of his/her neck and salivary glands. Some patients may also experience temporary taste changes. If your child does experience these side effects they should last no longer than a few days. Drinking lots of fluids after the treatment may help reduce this problem, as can chewing gum or sucking boiled sweets. What happens after treatment? If your child received rhtsh (thyrotropin alfa) injections they will continue with their thyroid hormone tablets, as prescribed. If they stopped taking their thyroid hormones they will be asked to re-start their thyroid replacement tablets immediately on discharge from hospital. You will be given an appointment for you and your child to see your doctor in clinic approximately four weeks post-treatment. Your doctor will have all the results of the blood tests and post-therapy scans and will discuss these with you. When will I know how well the treatment has worked? The treatment works slowly over a period of months. Usually your child will have an ultrasound scan and a blood test 9-12 months after their treatment. Some patients may also require a diagnostic radioiodine whole body scan. Some patients will require more than one treatment. The post-therapy scan and blood test are used to decide how effective each treatment has been and if any more therapy is needed. Further follow up plans will be made at this time. 16

17 Is any other support available? This booklet deals with the physical aspects of your child s treatment but his/her emotional wellbeing and that of the family is just as important. Having treatment can be deeply distressing for your child and the family. Within the paediatric oncology department there will access and support from play specialists, specialist isotope radiographers, a Macmillan information and support radiographer, paediatric nurses and paediatric social workers. However, if your child requires further medical or emotional support, he/she can be referred to a variety of health professionals specialising in children s and young people s needs. Everyone is here to make sure your child s treatment goes as smoothly as possible and to support the entire family through this difficult period. We will try to help with any questions or problems you may have. Glossary (or some words you may hear) Radiation: The shortened term for ionising radiation, it is used to describe the wave or particle emitted by a substance. Radioactive: A term used to describe a substance that emits radiation. 131 I is radioactive. Radioisotope: A radioactive substance. Again, in this case 131 I is the radioisotope. Half-life: As radioisotopes emit radiation they decay and become weaker. The halflife is the amount of time it takes for a radioisotope to decay to a state in which it emits only half as much radiation. The half-life for 131 I is eight days. µsv (microsievert): A unit of radiation dose. 17

18 Bq (Bequerel): A unit which describes how much radioactivity is present. Dosemeter: A small device that is worn to measure radiation dose. Radiation meter: An electronic device used to detect the presence of radiation and measure radiation levels. Contamination: The presence of radioisotope ( 131 I) in an undesired area. For example on the soles of shoes or in the hallway outside the room. Contamination, in this case, is essentially the presence of 131 I anywhere but in your child s body or in the toilet. Lead shield: Used to stop gamma radiation. Since lead shields are very thick and lead is a very dense material, it stops or absorbs almost all of the radiation from 131 I. Ablation: The destruction of residual thyroid tissue. 131 I is preferentially taken up by any thyroid tissue and destroys it with radiation. Thyroid Stimulating Hormone: This is released by the pituitary gland to regulate the function of the thyroid. Thyroid replacement hormones, such as Levothyroxine Sodium (T4) and Liothyronine (T3), suppress TSH levels following removal of the thyroid However, high TSH levels promote high uptake of 131 I which is why replacement hormones are stopped pre-treatment. 18

19 Radiation Restrictions The physics team will monitor any residual radioactivity in your child daily. The result will be written outside the treatment room. > 800 MBq Remain in hospital protected room on T11. Full precautions MBq Must be in protected room on T11 if requiring medical/nursing care. If well, may go out in private transport. Must avoid public places. Must avoid contact with other children and women who are or might be pregnant. Must sleep separately MBq Must be in protected room on T11 if needing medical/nursing care. If well, may go out. Must avoid prolonged contact with other people in public places. Must avoid contact with other children and women who are or might be pregnant. Must still sleep separately MBq Must be in side room on children s ward if needing medical/nursing care. If well, may go out. Must avoid contact with other children and women who are or might be pregnant. 19

20 <30 MBq No restrictions. May be on open children s ward. May receive stem cells. If there is anxiety about myelosuppression, stem cells may be returned if level is greater than 30 MBq at clinician s discretion. Any further questions? If you have any further questions about your child s treatment please contact: Specialist Isotope Radiographers Direct phone: Switchboard: ext 74286/ bleep 1089 or 1097 T11 North Ward Direct phone: / Radiotherapy Medical Physics Tel: Bleep 2173 Macmillan Information and Support Radiographer Direct phone: Switchboard: ext 73711/ bleep mwilliams21@nhs.net 20

21 Other useful contacts British Thyroid Foundation Tel: or Website: Butterfly Thyroid Cancer Trust Tel: Website: British Thyroid Association Website: CLIC Sargent Freephone helpline: (Mon-Fri 9am-5pm) Website: Teenage Cancer Trust Tel: Website: Children s Cancer and Leukaemia Group (CCLG) info@cclg.org.uk Website: Macmillan Cancer Support Cancer Line Freephone: (Mon-Fri 9am-9pm) cancerline@macmillan.org.uk Website: 21

22 Carers UK Freephone: (Wed - Thurs 10am-12pm and 2-4pm) info@carersuk.org Website: Please note: University College London Hospitals NHS Foundation Trust cannot guarantee the quality of the information or advice provided by outside organisations and charities. 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. PALS@uclh.nhs.uk Telephone: Website: 22

23 Space for notes and questions 23

24 How to find us First published: October 2017 Date last reviewed: October 2017 Date next review due: October 2019 Leaflet code: UCLH/S&C/CD/PAEDRT/IODINE/1 University College London Hospitals NHS Foundation Trust 24