Total Skin Electron Therapy – TSET

Total Skin Electron Therapy (TSET) is a type of radiotherapy that uses electrons to treat the skin

It is sometimes called Total Skin Electron Beam Therapy (TSEBT). This treatment has been used for many years to treat skin lymphomas, including mycosis fungoides.

This leaflet aims to help you and your family understand more about this treatment. It will be given to you in addition to the information you will receive from your Clinical Oncologist (who is a specialist doctor in cancer treatment). His/her team will be caring for you during your treatment. This team will include radiographers and clinical nurse specialists but may also include other specialist health care professionals.

This leaflet describes radiotherapy planning and treatment. It also explains the side-effects which you may experience during and after treatment. Each person’s treatment will vary, so the information given is a general guide. The healthcare team looking after you will explain your treatment and the side-effects in detail. If you have any questions after reading this leaflet, please speak to the team looking after you or ring the numbers at the end of leaflet. Staff will make every effort to meet your individual needs or will direct you to the person who can help.

All your radiotherapy planning appointments and treatment will take place at the Radiotherapy Department on Level -2 of Bexley Wing.

What is radiotherapy?

Radiotherapy is the use of high energy X-rays and other types of radiation to treat cancer. The radiotherapy causes damage to cancer cells in the treated area. Although normal cells are also affected, they can repair themselves and are able to recover. When you are having your radiotherapy you do not feel anything and it does not make you radioactive. It is perfectly safe for you to be with other people, including children and anyone who may be pregnant, throughout your treatment. You may hear a buzzing noise when the machine is switched on. The radiation is delivered by a treatment machine called a ‘linear accelerator’, as shown here in the photograph.

How often is it given?

The doctor will discuss how many treatments are appropriate for you. This can vary from person to person but is usually between 5 and 12 treatments. Treatment is given daily, usually Tuesday to Friday. Occasionally there may also be treatment on a Monday.
Your treatment will usually be given as an outpatient. Sometimes the doctor may decide to give you extra treatments to other small areas of your body. If this is required, it may be given before or after TSET treatment.

Who will I meet?

Therapeutic radiographers

Radiotherapy is given by therapeutic radiographers of any gender. They are highly trained in the accurate planning and delivery of radiotherapy treatment.
You will see your radiographers at each treatment session. They will be happy to answer any questions you may have.

Student radiographers

The radiotherapy department is a training centre for therapeutic radiographers. They are supervised at all times. If you do not wish students to be present, please speak to a member of staff. This will not affect your treatment or care.

Important advice before your treatment

It is very important that patients who could become pregnant, are not pregnant at the start of their radiotherapy course. Also, patients should not become pregnant during their radiotherapy treatment, as this can have an effect on the unborn child. Use an effective form of contraception, for example condoms, coil, depo injection or contraceptive pill.

For more information about contraception and pregnancy during cancer treatment, please read the leaflet below. Please do not hesitate to ask your doctor or nurse if you have any questions or concerns about these issues.

Planning your treatment

Your first appointment for radiotherapy will be a planning appointment. This will be used to gather all the information we need to accurately plan your treatment. We will contact you by phone, with an appointment for your radiotherapy planning session. Directions to the hospital and transport arrangements will be discussed with you at this point.

You may see your clinical oncologist (or a member of their team) at this appointment. This is an ideal opportunity for you to ask questions. If you have not previously consented to your treatment you will be asked to sign a consent form.

What to bring with you:

• a list of all questions you may have;
• an up-to-date list of all the medications you are taking (including inhalers, sprays, vitamins or herbal products);
• any medication that you may need during your visit;
• something to eat and drink and something to occupy yourself with, as this first visit can be quite lengthy (up to two hours).

Before you start treatment

You may need an appointment to visit the Mould Room. Here they make lead shielding which covers your finger and toe nails. This shielding protects the nails from the radiotherapy. Sometimes we ask you to wear lead-lined swimming goggles during treatment. Occasionally more shielding is used. It can feel quite heavy.

Your Test Spin

You will be asked to visit a treatment machine in the radiotherapy department for a Test Spin. This visit is to check you are able to cope with the treatment position (please see photo) you need to stand in. The turntable in the floor moves round very slowly but we need to make sure you are safe and comfortable.

We will ask you to stand on the treatment turntable and hold a handle which is suspended from the ceiling. You will hold a thin walking stick in the other hand to help you keep your balance. We then start the turntable while we are still with you. You will be spinning for approximately 10 – 11 minutes; this is also the duration of daily treatment. We can stop it at any time if you ask. You will be asked to alternate (swap) your feet and hand positions on a daily basis once the treatment starts. We need to check that you are able to hold both arms up in the position shown.

Once you and the team are all confident you will be able to manage the treatment, we will arrange for you to come back and start the treatment.

Having your treatment

When you arrive for your treatment you should go to the radiotherapy main reception desk at the entrance of the radiotherapy department. On the first occasion you will be given a list of all your appointments. You will then be escorted to the waiting area for your machine.

The radiographers will explain what will happen and answer any questions that you may have.

Treatment is given daily, usually Tuesday to Friday. It is likely the treatment time will be late afternoon. There may be occasions when you may have a longer stay in the department, or be asked to come at a different time. This is for example because you might see your consultant oncologist.

You will be asked to remove all clothing and jewellery and change into paper pants and a paper gown. This is because anything that is between you and the treatment beam can reduce the dose that you receive. This could make the treatment less effective.

You will meet radiographers and physicists in the treatment room. They are all there to make sure that your treatment is delivered safely and accurately. They will also be checking that you remain comfortable throughout.

The radiographers will put on any shielding if required and help you into position. You will be asked to stay as still as possible during the treatment but you should breathe and swallow normally. A large see-through perspex screen will be placed in front of you, on which the physicist will place measuring devices. The turntable will start to rotate while the radiographers are in the room. They will make sure you are okay before they leave the room.

When you are having your radiotherapy you do not feel anything and it does not make you radioactive. You may hear a buzzing noise when the machine is switched on.
Some patients notice a metallic smell. This smell is normal and is due to the way the radiation beam reacts with air particles.

Treatment takes approximately 10 minutes and the radiographers will always be watching you on a closed circuit TV (CCTV) monitor. The CCTV camera is not recording or saving any images. There is also an intercom system so that radiographers can talk to you. They can switch off the machine if needed and come to check you are okay if you shout out.

If you would like to listen to music during your treatment please let us know. As soon as the treatment is finished the radiographers will come back into the room and turn the turntable off. Once the treatment is completed you will be able to go home.

On some days the radiotherapy department may be busy and there may be a delay before your treatment. We will keep you informed of any delays over 30 minutes, please see the delay boards in the waiting areas. It may be a good idea to bring something to eat and drink with you. This includes any supplement drinks you have been asked to have and any medication you may need. There is a restaurant and café available on Level 0.

When will I see the consultant during my treatment?

The consultant/registrar (doctor) will see you once a week in Review Clinic. This gives you an opportunity to discuss how you are coping with the treatment. You will also see the Review Clinic nurses at least once a week to assess your skin.

You may be asked to have a full blood count (blood test) once a week before attending the review clinic appointment.

Side-effects

Short term (acute) effects happen during or soon after treatment. Long term effects occur months or years later. Some side-effects are common, whilst others are rare.

The area and amount of treatment given to you will affect which side-effects are most likely to happen to you. Your oncologist will discuss this with you. If you develop any radiotherapy side-effects you will be given advice and support by your healthcare team.

Skin reactions – How should I care for my skin during and after radiotherapy?

Your skin may become very red and can become sore during and after your treatment. You will need to use moisturisers on your skin regularly during your treatment. If you do not have any moisturiser, the doctor will prescribe some for you. Please apply a thin layer of moisturiser to all your skin at least twice a day. However, it can be used more often if your skin feels dry or tight.

Avoid hair removal where possible, including shaving, waxing, cream and lasers unless advised otherwise by your consultant, nurse or radiographer.

If your skin breaks down (peels or weeps) the nursing staff in Review Clinic will assess you and provide dressings to the areas that need them. Please do not use any cream in areas where you have dressings.

Hair loss

Many patients find that towards the end of radiotherapy and in the week afterwards their hair thins. This affects everyone differently. Usually your hair will grow back over the few months following radiotherapy. It’s not always exactly the same as it was before though.

Ankle swelling

You may find that your ankles become slightly swollen during radiotherapy. This will settle down again after treatment. However, if you are worried about your ankle swelling, please discuss this with your consultant.

Tiredness (fatigue)

Nearly all patients having radiotherapy will feel tired. Be prepared to take things easy during treatment and allow for extra rests. There is a Macmillan information leaflet available called ‘Coping with fatigue’. If you would like a copy or support with your fatigue, please ask a member of staff.

Fatigue usually improves in the weeks to months after treatment.

Things you can do to help include:

• Gentle exercise can help reduce the symptoms of fatigue.
• Having enough to drink can prevent tiredness from dehydration.
• Small meals or snacks eaten more often than three times a day may be easier to face.
• Try to get a good night’s sleep where possible, a daytime nap may help.
• Try to ‘pace’ yourself, listen to what your body is telling you, rest if you need to.
• Pick out the things that you enjoy, and try to accept help with other tasks.
• Little and often is the rule of thumb.

Long term side-effects

Cancers caused by the radiotherapy (Rare)

When you have had radiotherapy there is a risk that a new cancer can develop many years later caused by the treatment. However, this is rare. Accurate information on this is not available. However, the benefits of the treatment far outweigh any potential risk in the future. If you are at all concerned then please speak to your medical team.

When radiotherapy has finished

Your side-effects may get worse in the first few weeks after treatment and will then gradually settle. You should start getting back to normal after about 4-6 weeks but it may take a little longer. Tiredness can last for several months and you may need to continue to rest more than usual.

After your treatment follow-up checks will be carried out regularly by your consultant in Leeds and sometimes by the hospital team closer to your home.

Research at Leeds Cancer Centre

Leeds Cancer Centre is a major centre for cancer research. You may be asked if you would like to help with some of the clinical studies. You are under no obligation to take part in any trials. Your treatment will not be affected in any way if you do not wish to take part.

If you do take part in a clinical trial you may meet a research nurse or radiographer. They will be helping to run the trial.

Further information and support

If you have any questions please ask your hospital team. We all have our own ways of coping with difficulties.

Some people have a close network of family and friends who provide emotional support. Others would rather seek help from people who are not involved with their illness.

The following are also available as sources of information and support that you may wish to use.

Clinical Nurse Specialists (CNS)

Your CNS is available to discuss any aspect of your treatment with you. You will be seen by a CNS before your treatment. This is to offer support and advice about the practicalities and effects of your treatment and answer any questions you may want to ask.

Your CNS will also assess and discuss any physical, psychological, social, occupational and spiritual needs that you may have.

Macmillan Specialist Radiographer and Macmillan Radiotherapy Nurse Specialist

Sometimes people need more help if they are feeling depressed, very anxious or are having problems with their Radiotherapy. If this is the case you may benefit from seeing the Macmillan radiographer or nurse specialist.

Your oncologist, radiographer or nurse can refer you at any point before or during your treatment.

Local Support Services

Leeds Cancer Support

Leeds Cancer Support complements care provided by your clinical team. We offer access to information and a wide range of support, in a welcoming environment for you, your family and friends.

We can be found in the information lounges in Bexley Wing and also in the purpose built Sir Robert Ogden Macmillan Centre (behind the Thackray Medical Museum).

The Sir Robert Ogden Macmillan Centre

The Centre is on the St James’s Hospital site and offers a variety of support services including complementary and supportive therapies.

National support organisations

Hotel Bexley Wing

Hotel Bexley Wing is located on the eighth floor of Bexley Wing. It offers 19 twin rooms and one single room.

All rooms have an en-suite bathroom, tea and coffee-making facilities, a mini-fridge, towels, a hairdryer and a television. Two rooms have wheelchair access, and there is also a wet room.

Staying at the hotel

Patients can stay free of charge. A relative can also stay free of charge when sharing a room with the patient.

If a relative needs their own room, there is a charge, and availability cannot be guaranteed.

Meals and facilities

Breakfast and lunch can be purchased from the restaurant in the Bexley atrium if you are able to get there.

At other times, you will need to bring your own food or purchase something to eat. A small fridge is available for personal use.

Please note: There are no staff in the hotel after 3:45pm until the following morning.

Car Parking

When you are coming for radiotherapy planning and treatment your parking is free in the on-site multi-storey car park. Please ask for more information at the radiotherapy main reception desk.