Total Skin Electron Treatment (TSET) for mycosis fungoides (skin lymphoma)

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1 Feedback We appreciate and encourage feedback. If you need advice or are concerned about any aspect of care or treatment please speak to a member of staff or contact the Patient Advice and Liaison Service (PALS): Freephone: From a mobile or abroad: ext or pals@nuh.nhs.uk Letter: NUH NHS Trust, c/o PALS, Freepost NEA 14614, Nottingham NG7 1BR Total Skin Electron Treatment (TSET) for mycosis fungoides (skin lymphoma) Information for patients Radiotherapy Department If you require a full list of references for this leaflet please patientinformation@nuh.nhs.uk or phone ext The Trust endeavours to ensure that the information given here is accurate and impartial. This document can be provided in different languages and formats. For more information please contact: The Nottingham Radiotherapy Centre City Campus Hucknall Road, Nottingham Tel: Liz Bennett, Liz Ford, Radiotherapy Department May All rights reserved. Nottingham University Hospitals NHS Trust. Review May Ref: 1730/v2/0517/AS. Public information

2 This leaflet is aimed at people who have been diagnosed with mycosis fungoides (skin lymphoma). This leaflet aims to provide information regarding the radiotherapy treatment for mycosis fungoides (skin lymphoma). Notes Total Skin Electron Treatment (TSET) Total Skin Electron Beam Treatment (TSET) is a specialist radiotherapy treatment used to treat mycosis fungoides. It is used to treat large areas of the body. What happens in the Radiotherapy Department? There are several people involved in planning your treatment; your doctor, a physicist, and the radiographers who will be giving you your treatment. The first appointment is in the radiotherapy clinic. The doctor will explain the treatment in detail to you and will plan out what areas of your body need to be treated and any shielding that is required to protect certain parts of the body. After this you will have your TSET preparation. TSET preparation Before treatment starts the team will guide you through the treatment positions you need to be placed in (see page opposite). These positions are to enable us to treat as much of your skin as possible. This takes approximately one hour. 2 11

3 Useful Contacts If you would like more information or to talk to someone about how you are feeling then please use the following numbers: Radiotherapy Information and Support Tel: Macmillan Information Centre The Macmillan information centre is located near oncology outpatients on the ground floor south corridor at the City Hospital campus. Tel: Maggie s Centre Based at the Nottingham City Hospital. No appointment is required and help is available free of charge with, information, benefits advice and psychological support to anyone affected by cancer. What will happen to you? A radiographer takes you into the room and helps you stand in the correct position You will need to undress except for your underwear, in order to expose the areas to be treated We will shield your eyes using a lead eyemask Other parts of your body may also need to be Shielded such as your head or finger and toe nails. The staff will explain what they are going to do. Treatment Your treatment is usually given four times a week between Monday and Friday, over a period of up to five weeks. 10 3

4 For the treatment you will be in the same six positions as you were for the preparation. Treatment takes about forty minutes each time. All six positions will be treated each day, using 2 beams per treatment position, i.e. a total of 12 beams altogether. The radiographers will help you into position as required for each treatment. On the first and third treatments we will place some small dose monitors onto your skin in the area to be treated. The radiographers go outside the room to switch on the treatment machine. Each beam takes about a minute. The radiographers can see you on the TV monitors all the time. You will not see or feel anything when the machine is switched on. The radiographers will come back into the room before starting the next beam, keep still until both beams have been completed. The radiographers will help you move into the next position when you need to. It might help to pass the time if you bring a CD or ipod to listen to. There is a CD player in the treatment room. Getting to Radiotherapy Radiotherapy is situated on two sites within the City Hospital campus. The Radiotherapy Centre is located on St Francis Way at junction N18 on the North Corridor, and the South Radiotherapy Department is located on the South Road at junction S2 on the South Corridor. You will be informed which site you need to attend. There is pay and display parking at the hospital. Parking permits are available from Radiotherapy reception. Please ask for details. If you are receiving income support or other benefits you may be able to claim your travel expenses back. Please ask for details at Radiotherapy reception. We can book hospital transport for some people with a medical need. Please speak to a member of staff if you think you need hospital transport. If you cannot get to the hospital by your own means please telephone the Radiotherapy Department to discuss your requirements. Extra boost fields are sometimes required to the feet and skin around the eye. Your doctor will discuss any boost treatments required with you. We will arrange for you to have a set of photographs taken in the medical photography department before you start your treatment and then every week until the end of your treatment. This is to keep a record of your skin condition throughout the treatment. 4 9

5 Loss of appetite You may find you lose your appetite when you are recovering from treatment. This is quite usual. Don t worry if you can t eat proper meals Eat small snacks as often as you can Choose foods that you enjoy Buy foods that are easy to prepare or ready prepared If you re not eating well it s important to make sure you still drink fluids. Aim for one to two pints per day. One pint is about four cups If you have any concerns at any time then please speak to one of the radiographers. Follow up appointments You will receive a follow up appointment, usually a week after finishing your radiotherapy treatment. This will allow the doctor to monitor your treatment reactions. Please make sure this appointment is made before you last treatment. Are there any side effects? Most side effects are normal reactions to treatment. You may experience some, or all, of the following side effects. They usually start to develop five to ten days from the start of treatment. Skin changes Your skin in the treated area will become inflamed by the radiotherapy: It will start to look pink and then red Some people find that it feels tender, sore or itchy Some areas may become moist and peel. The radiographers will look at your skin each day and provide skin car advice. The skin reaction will carry on developing for about a week after your treatment has finished. This means that your skin may become more red and sore during this time. Continue with your skin care advice until the reaction has settled. Most people find that by six weeks from the end of treatment their reaction has settled down. It takes longer for the skin to heal in areas most affected by the mycosis fungoides. If your skin reaction changes and you are not sure what to do please telephone for advice. 8 5

6 Skin care during treatment As your skin may be more sensitive during treatment we suggest that you care for it in the following way: Wash gently with warm water Use a mild, unperfumed soap Pat dry with a soft towel Take special care in skin folds or creases Smooth on an emollient cream, or any of your normal creams if they have been approved by the Doctor. Wear loose, soft cotton clothing that won t rub your skin If you need to shave try to use an electric razor. After two to three weeks the hair will stop growing in the treated area Avoid direct sunshine on the treated area Do not scratch, rub or massage the area Hair loss If we are treating your head you will lose your hair, including your eyebrows and eyelashes. We will tell you if this is likely to happen to you. Your hair will begin to fall out after two to three weeks of treatment. We can arrange for you to choose a suitable wig before this happens. Please ask for details or contact Radiotherapy Information and Support. Other side effects Swelling of the hands and feet Loss of finger and toe nails (unless we are able to shield them) Delayed side effects These may occur months or years after the radiotherapy treatment: Generalised dry skin Decreased secretion of sweat and oil from much of the skin Skin pigmentation changes and the appearance of tiny blood vessels under the skin. This is called telangiectasia It is possible that your hair may not grow back very well, if the head is treated Finger and toe nails may not grow back properly, unless they are shielded during treatment How will I feel while I am having treatment? Fatigue Coping with an unexpected illness and the treatment can be very tiring both physically and emotionally. You might feel that your energy levels are low, a little like when you have had flu. Everyday tasks to run your home may be more difficult than usual. Some tips which may help are: Rest when you feel tired Take some gentle exercise if you feel able to Vary your activities to stimulate your interest Use your energy to do things that you enjoy You may need to have help if you live alone, please contact Radiotherapy Information and Support if you are worried about this. 6 7