University College Hospital

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1 University College Hospital Information for adults having radioactive iodine ( 131 I) treatment Radiotherapy Department Patient information series No.15

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 What is radioiodine ablation/therapy? 3 Asking for consent 4 What about conception, pregnancy and breast-feeding? 4 What do I need to prepare for radioiodine ablation/therapy? 5 Where is the treatment given? 6 Why do I need stay in a protective room? 6 Can I have visitors? 8 What happens on admission? 8 What should I bring into hospital with me? 9 What happens on discharge from hospital? 10 What are the side effects from this treatment? 12 What happens after my treatment? 12 When will I know how well the treatment has worked? 13 Any further questions 13 Other useful contacts 14 Glossary 15 Radiation restrictions 17 Space for notes and questions 19 How to find us 20 2

3 Introduction This information booklet has been written for patients who have been recommended a course of radioiodine as a treatment for their thyroid cancer. We understand that this is a worrying time for patients and you may feel that you have been given lots of information. We hope this booklet answers any questions you may have about the treatment. However, if you still have any questions or concerns, please let your doctor or specialist isotope radiographer knows. We are here for you and are in the best position to advise you. What is radioiodine treatment? Radioiodine is a radioactive form of iodine that has been used to treat thyroid cancer for over 50 years and is extremely safe. The treatment is a known, targetedmethod of destroying any remaining normal thyroid tissue or thyroid cancer cells that may remain following your total thyroidectomy surgical procedure. As the thyroid gland and related cells need iodine in order to work, they absorb any iodine in your body. This then releases radiation in the parts of the body where it has been absorbed. This provides an easy way to target the radiation to the places where it is needed. Radio-iodine treatment together with surgery will maximise the chances of eradicating your cancer. The need for radioiodine treatment depends on the risk that the cancer might progress after surgery. It is not needed for very tiny cancers which have been removed. It is certainly needed in high-risk patients where the disease has spread. Some patients with lower risk may choose not to have this treatment however this is something that you should discuss with the Clinical Oncologist treating you before making a decision. 3

4 Asking for consent We want to involve you in all the decisions about your 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 have the procedure and understand what it involves. Staff will explain all of the risks, benefits and alternatives before they ask you to sign a consent form. If you are unsure about any aspect of your proposed treatment please do not hesitate to speak to a senior member of staff again. What about conception, pregnancy and breast-feeding? As with all procedures involving radiation, you should not undergo treatment if you are pregnant. You must tell the staff if there is any chance of you being pregnant. You must also not have this treatment if you are breast-feeding. If you are a woman of child-bearing age, you will need to have a pregnancy test prior to administration of radioiodine and the treatment will be given only if you are found not to be pregnant. You are advised not to become pregnant for six months following treatment and breast feeding should be stopped eight weeks prior to administration. You should use a reliable form of contraception from the time of your treatment and for six months after. Female fertility should not be affected in the long term even after repeated doses of radioiodine administrations. For men who have been given radio-iodine therapy we recommend that you do not father a child for 4 months after treatment. Your fertility should not be affected in the long term, but there may be a small risk of reduced fertility if repeated radioactive radioiodine is needed. In this situation you can be considered for sperm banking. Please discuss this with your specialist consultant or a member of the treatment 4

5 team as specialist advice and help is available. For both men and women you should use a condom for seven days after radioiodine treatment. What do I need to do to prepare for radioiodine ablation/ therapy? For good uptake of radioiodine, your blood levels of thyroid stimulating hormone (TSH) need to be high. To stimulate high blood levels, there are two possible approaches. You will 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- also known by the trade name of Thyrogen) are given. These allow you to carry on taking your thyroid 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. If you are one of these patients you will need to stop your Levothyroxine Sodium (T4) four weeks before admission, or your Liothyronine (T3) ten days before admission. You may feel tired or weak when not taking the tablets. This is normal and the symptoms will disappear once you start taking the tablets again, which is normally on discharge from hospital. The doctor will advise which method is preferred for you. If you are taking any other regular tablets you should carry on doing so, as prescribed. Please bring a supply with you on admission and show them to the doctor who examines you. 5

6 For two weeks before coming into hospital it is also recommended that you avoid iodine-rich foods. Eating these foods may reduce the effectiveness of the treatment. We advise that you: Do not eat fish, kelp and all seafood. Do not take vitamin supplements which contain iodine or cod liver oil. Do not take cough medicine, iodised table salt or sea salt. Do 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 you are having a CT prior to treatment please inform your doctor or the radioisotope radiographer booking your treatment. If you have had a CT scan with iodine-based contrast recently, your treatment will be delayed until three months have elapsed. Where is the treatment given? Your treatment will be given in specialised protective side rooms on wards T13 or T14, on the 13 th and 14 th floor respectively of University College Hospital. You will need to be an in-patient for approximately one week. However your stay may be longer, depending on your family circumstances. Why do I need to stay in a protective side room? Unlike external radiotherapy, this treatment makes you radioactive for a period of time. The 131 I will enter your bloodstream and be taken up by remaining thyroid tissue or thyroid cancer cells. Most of the remaining 131 I will be eliminated through the urine over the following days while you are in the hospital. The 131 I can also be 6

7 excreted in other bodily substances such as saliva, vomit, faeces, perspiration and oils secreted by the skin. You will be required to stay in hospital for approximately a week in order to reduce radiation exposure to other people. Your discharge date will depend on how quickly the iodine is excreted from your body and you can encourage excretion by eating well and drinking plenty of fluids. The radioactive iodine is beneficial to you as it is treating your cancer, but people that do not need it should not be exposed to the risks of radiation. For this reason the regulations also stipulate restrictions while you are in hospital: You must not leave the room and must only use the shower and toilet in the suite. The en-suite shower and toilet are for your use only. You must only wash and dry your hands using the paper towels in the room and discard of them in the yellow bin bags. One of the two doors to the suite must always be closed. 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 you feel nauseous please ensure you tell the nursing staff immediately. A wax carton will be provided or the toilet if possible If you are male we encourage you to sit rather than stand whilst urinating, to minimise risk of contamination in their bathroom. Double flushing when toileting is also advised for all patients. 7

8 You will be asked to use disposable plates and cutlery and the nursing staff will bring your meals into your room. If you do not receive a meal for whatever reason, please ring the nurses station and they will provide you with one. Please also let us know if you have any special dietary requirements. We cannot emphasise enough how important it is for you to tell us if you have had any accident, particularly if any of your urine or vomit is spilt while in hospital. It can be dealt with properly if we know about it, but may be harmful to others if you fail to tell us. Can I have visitors? Adult visitors, other than parents, who are not pregnant, are allowed 24hrs after administration. Adults may visit for up to one hour and sit outside your room behind a lead screen. All visitors must report to the nurse s station on arrival. Please be aware that visitors who are under 18, are pregnant or are breastfeeding cannot visit under any circumstances. What happens on admission? On the day of admission, please take the blood form, given to you in clinic, to the 1 st floor Podium, Blood Collection Department. If you did not receive a blood form, please contact the specialist isotope radiographer who will send one via post. Once you have given your blood sample you may make your way immediately to the ward where you will be having treatment, you do not need to wait for a copy of your blood results as they will be sent electronically direct to the ward. On admission to the ward, you will be allocated a protected side room and be seen by the ward doctors and nurses. 8

9 Prior to your treatment administration, you will also be given an anti-sickness tablet. This is a precautionary measure, as most people do not feel sick as a result of the treatment. The treatment is routinely given as a small capsule and you will be given some water to help you swallow it. Please let us know at the earliest opportunity if you are unable to swallow capsules as in this case, we would administer the treatment in liquid form instead. The capsule will be administered on the afternoon of your admission and the whole process takes only a few minutes. The average stay in hospital is three to five days. During your admission you will have a whole body scan in the nuclear medicine department. This is a way of producing a map of where the iodine ( 131 I) is in your body and helps your doctor assess the progress of treatment. A porter will collect you from your room and take you directly to the nuclear medicine department for your scan. You will also be monitored by the radiotherapy physics team throughout your stay on the ward who will explain any restrictions you must adhere to. These restrictions will depend on the level of radiation in your body. They will also tell you when you can go home, from a radiation protection point of view, assuming there are no medical reasons why you may need to stay longer. What should I bring into hospital? Please only bring items which you will not need to take home immediately. Because of the treatment you are having, any personal possessions you bring in with you may become contaminated with radiation. You may need to leave some things behind if they carry traces of radioactivity. Due to limited storage space, we need to avoid this if possible. 9

10 The hospital does have Guest WiFi so if you do bring your mobile phone, tablet or ereader, it is important that they are all covered with cling-film to ensure they do not become contaminated when you are handling them. The cling-film may then be discarded at the end of treatment ensuring that you can take your items home with you. High-value items not covered with cling-film may need to remain at the hospital for a prolonged period post-treatment. You may wear hospital nightclothes and a dressing gown for the duration of your stay if you wish, and towels will also be provided. If you wish to wear your own clothes during the day please bring old clothing, as the department may need to retain them for some time after your treatment. There is a patient-line system in your room which allows you to make and receive telephone calls, watch television and access the internet. However you do have to buy tokens, which we would advise you to do before your treatment, either on the ward, the ground floor shop or via credit or debit-card in your room. A separate television, games console and ipad will be provided for your treatment admission. What happens on discharge from hospital? It is possible that your belongings, particularly your clothing and washing things, may become slightly radioactive. The radiotherapy physics team will check your belongings and let you know if there are any items they need to store. These may need to be kept for several months. If you would like them back, please let us know and we can contact you when they are ready to be collected. The physicists will also inform you of any restrictions you will need to adhere to when you leave the hospital. You may need to take some time off work and avoid public transport. You will probably be asked to avoid close prolonged contact with other people, especially children and pregnant ladies for a few days. These restrictions are put in place to limit unnecessary radiation exposure to others. 10

11 You will be given a yellow card detailing the treatment you have had, any restrictions in place at the time of discharge and the time for which these precautions must be followed. If you wish for your restrictions to be lifted at the earliest opportunity, we may recommend that you return to the hospital to be re-monitored; radiotherapy physics will advise on this prior to your discharge from the ward. Re-monitoring will allow review and update restriction recommendations and restriction periods if you return to UCLH. If you live some distance from UCLH it may be possible for this remonitoring to take place at another hospital closer to home (with Nuclear Medicine facilities) with prior arrangement. You must therefore not arrange any important engagements for at least one week after your admission to hospital. If you plan to fly between countries after treatment, please tell the specialist isotope radiographers. You should not fly until you 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 you are coming for treatment from overseas. It is possible that patients treated with 131 I can trigger alarms at airports, train stations and other areas with radiation-detection systems. Although the amount of 131 I is not a danger to the public, we recommend that you travel with a copy of a recent clinic letter and, if possible, your yellow card to ensure you do not have to make time-consuming explanations. Please see the radiation restrictions on pages 17 and 18 for further information. 11

12 What are the side effects from this treatment? Usually there are no major effects from the treatment. However, you may experience discomfort in your salivary glands, soreness in the neck, dryness and discomfort in the mouth and/or swelling of your neck and salivary glands. Some patients may experience altered taste sensation. If you do experience these side effects they should last no longer than a few days and simple analgesia such as gargling aspirin can relieve your discomfort. Keeping hydrating throughout and after treatment can also help with side effects, as can chewing gum or sucking boiled sweets. Late side effects incurred by treatment can appear to develop months of years after administration of radioactive radioiodine. This does include secondary malignancy and incidence of leukaemia; however the risk is low affecting around 0-5% of patients. The risk can increase with cumulative doses and with use of additional external beam radiotherapy. Patients who have received a high cumulative 131 I activity may also be more likely to develop second solid malignancies (for example, cancer of the bladder, colorectal, breast and salivary glands). Your clinical oncologist will discuss this with you in more detail if it is applicable to you. What happens after my treatment? If you received rhtsh (thyrotropin alfa) injections you will continue on with your thyroid hormone tablets, as prescribed. If you stopped taking your thyroid hormones you will be given thyroid hormone replacement tablets to start after the treatment. You will be given an appointment to see your doctor in clinic approximately 4 weeks post-treatment. Your doctor will have all the results of your blood tests and posttherapy nuclear medicine scan and will discuss these with you. 12

13 When will I know how well the treatment has worked? The treatment works slowly over a period of months. Usually you will have an ultrasound scan and a blood test 9-12 months after your 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. Any further questions If you have any further questions about your treatment please contact: Specialist Radioisotope Radiographers Direct phone: Switchboard: ext 74286/ bleep 1089 or 1097 T14 North Ward Direct phone: / T13 North Ward Direct phone: Radiotherapy Medical Physics Tel: Bleep 2173 Macmillan Information and Support Radiographer Direct phone: mwilliams21@nhs.net 13

14 Other useful contacts British Thyroid Foundation Tel: or Website: Butterfly Thyroid Cancer Trust Tel: Website: British Thyroid Association Website: Macmillan Cancer Support CancerLine Freephone: (Mon-Fri 9am-9pm) Website: Carers UK Freephone: (Wed - Thurs 10am-12pm and 2-4pm) info@carersuk.org Website: Cancer Research UK Website: 14

15 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. Telephone: Website: 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. Bq (Bequerel): A unit which describes how much radioactivity is present. Dosemeter: A small device that is worn to measure radiation dose. 15

16 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. 16

17 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. 17

18 <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. 18

19 Space for notes and questions 19

20 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/RT/RIT/1 University College London Hospitals NHS Foundation Trust 20