Prophylactic Cranial Irradiation

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). Their team will be caring for you during your treatment. This team will include therapeutic radiographers and clinical nurse specialists but may also include social workers, physiotherapists, occupational therapists, speech and language therapists and dietitians.

The 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 the 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 and treatment will take place in the Radiotherapy Department on Level -2, Bexley Wing, Leeds Cancer Centre, St James’s Hospital (LS9 7TF).

Radiotherapy reception Tel: 0113 206 8940

Please do not bring any valuables into hospital with you as the Trust cannot accept liability for loss or theft.

Why have PCI radiotherapy?

Radiotherapy can be used to try and prevent cancer developing. This is called prophylactic treatment.

Radiotherapy can reduce or delay the growth of cancer cells that may have spread to the brain.

Prophylactic Cranial Irradiation (PCI) treatment is given to some patients who have Small Cell Lung Cancer (SCLC). SCLC sometimes moves to the brain but can be too small to see on scans. These spots of cancer could grow and cause patients to become unwell. Radiotherapy to the brain aims to treat any cancer in the brain before it starts to grow, and so reduces the number of people who get symptoms from cancer in the brain.

What is radiotherapy?

Radiotherapy is the use of high energy X-rays and other types of radiation to treat cancer. The tissues of the body are made up of tiny building blocks called cells. 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.

Radiotherapy is a local treatment. This means it only affects the part of the body that is treated.

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.

It is perfectly safe for you to be with other people, including children and anyone who may be pregnant, throughout your treatment.

You will have your radiotherapy on a treatment machine called a linear accelerator, as shown here in the photograph. You will see your radiographers at each treatment session, and they will be happy to answer any questions you may have.

How often is it given?

Prophylactic cranial irradiation is usually given over one or two weeks. This is a total of between 5 or 10 treatment days. Treatment is usually given daily, Monday to Friday however your treatment may not start on a Monday.

You may need to be treated on a weekend due to a bank holiday and we will let you know if this is the case. Your radiographer will be able to explain the details of your individual radiotherapy appointments. Your treatment will usually be given as an outpatient.

Visiting us before your treatment

If you would like to visit the radiotherapy department before starting treatment please call 0113 206 7603. This visit can be very useful as you can find out more information about radiotherapy.

Who will I meet?

Therapeutic radiographers

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

Students 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.

Others involved in your care

You may meet other staff whilst you are coming for radiotherapy. Everyone you meet will introduce themselves, tell you their job title and explain the role they have in your care.

Important advice before your treatment

Pregnancy

It is very important that patients of childbearing potential are not pregnant at the start of a course of radiotherapy and that they do not become pregnant during a course of radiotherapy because it 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 see the ‘Contraception and pregnancy during cancer treatment’ leaflet. 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.

Some tests and scans may be needed to help plan your treatment. We will explain which of these you will need when your appointment is made. 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).

Mould Room

Radiotherapy involves exact positioning of the radiation beam, so you will need to stay very still while you are having treatment. To help you stay still when treating your brain, we make a mask. You will wear your mask for your planning scan and treatments. There is a leaflet available giving more information. You will be given an appointment to attend the Mould Room where the masks are made. If you have any concerns about the mask, please let your clinical oncologist or a member of their team know. They will help you through or contact the support team who will be able to help you. Alternatively you can contact the support team on 0113 206 7616 or email: [email protected].

Your planning scan

In order to plan your treatment you will have a planning CT scan. This is done on a machine called a CT Simulator, shown here in the photograph. This is a CT scanner that allows the images to be sent to the radiotherapy computer planning system. There will be several members of staff present at your scan: Therapeutic radiographers, possibly a mould room technician and a dosimetrist (the person who will produce the computer plan for your treatment).

Planning scans are not diagnostic examinations and will not be reported on as such.

The scan will be taken with you lying in the same position as for your treatment. It is in a position that you must be able to maintain for about 10 minutes each day during your radiotherapy treatment. If you are not comfortable and think you are unable to hold this position then please tell the radiographers. They can make you more comfortable.

The radiographers will draw some marks on the mask, to be used as reference points for your treatment. These marks help us to ensure you are in the same position each day.

You will then be scanned, which will only take a few minutes.

Following the scan the radiographers will give you the time of your first appointment on the treatment machine. This is most likely to be a couple of weeks after the planning visit. The radiographers will talk to you about any further appointments you have.

Having your treatment

When you arrive for your treatment you should go to the radiotherapy reception desk at the entrance of the radiotherapy department. On the first occasion you will be given all your appointments and 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 usually given daily, Monday to Friday however your treatment may start on any day of the week. Whenever possible you will be treated at the time of day that suits you, but this cannot always be arranged or guaranteed. There may be occasions when you may have a longer stay in the department or be asked to attend at a different time, for example to see your oncologist.

You will have your radiotherapy on a machine called a Linear Accelerator. You may need to undress and put on a gown, the radiographers discuss this with you when you first attend the department. The radiographers will position you, and adjust the treatment couch and machine to the correct positions. For the first few treatments and also intermittently during treatment we will also take images to check the accuracy of the treatment which will take a few more minutes.

These images do not monitor your condition but are purely for treatment accuracy.

You will be asked to stay as still as possible during the treatment but you should breathe and swallow normally. Once you are in the correct position the radiographers will leave the room to switch on the machine.

You will only be alone for a few moments at a time. The radiographers will be watching you on a closed circuit TV (CCTV) monitor during treatment.

The CCTV camera is not recording or saving any images.

There is also an intercom system so the radiographers can talk to you.

If you would like to listen to music during your treatment, please let us know.

The treatment only takes a few minutes but you will be in the treatment room for about 10-20 minutes. The machine stops automatically after your prescribed dose of treatment has been given. The radiographers can stop the machine at any time if needed. The treatment machine makes a buzzing sound when switched on. You do not feel anything.

The radiographers may need to come in and out part way through each treatment.

After the treatment is complete the radiographers will come back into the room and help you off the couch.

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, please see the delay signs in the waiting areas.

It may be a good idea to bring something to eat and drink with you, including 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.

Your treatments will generally be on the same machine, although there may be days when this machine is being serviced and your treatment will be in a different room.

It is very important that you do not miss treatment days as it may make your treatment less effective. If you feel you are unable to attend for any reason please telephone us so that we can discuss this with you. If you have any queries about your appointment times please discuss these with the radiotherapy co-ordinators on your treatment unit.

For appointment queries please telephone the radiotherapy reception desk 0113 206 8940 for further advice.

Side-effects

Side-effects can be divided into short term (acute) effects, that happen during or soon after treatment, and long term effects occurring 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.

Short term side-effects from radiotherapy

Most side-effects are common and are temporary.

Side- effects tend to build up from about the second week of treatment and will be at their worst at the end or just after the treatment course.

They generally last a number of weeks or months after the treatment has finished.

Tiredness (fatigue)

Nearly all patients having radiotherapy will feel tired for 6-12 weeks. Be prepared to take things easy during treatment and allow for extra rests. Try to continue with some of your normal routines and activities if possible. If you usually work you may find this can help maintain your mood, but you may find it better to reduce your hours or take some time off. Some patients develop tiredness after treatment which lasts for many months. It is difficult to predict which patients will develop long lasting tiredness before treatment begins.

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.

Hair Loss

The hair follicles (roots) are very sensitive to radiation. Any hair directly in the treatment field will gradually fall out during the course of treatment or shortly afterwards. You may start to notice your hair thinning 2-3 weeks after starting radiotherapy. This hair loss may be temporary.

When the course is finished your hair should grow back, but in places it may not be as thick as before. The texture and colour of the new hair might change. It can take up to six months before your hair re-grows. Frequently there are areas of the scalp where the hair may not grow back at all.

A wig can be provided for you if you would like one. Please ask your specialist nurse, radiographer or doctor. Turbans, scarves or hats are alternatives to a wig. You may find wearing a hair piece, cap or hat more comfortable. Any head wear worn should not be too tight. There is a hair loss workshop and support available to anyone experiencing hair loss. For more information please contact the Sir Robert Ogden Macmillan Centre.

Skin reaction

The skin in the treated area may start to redden or darken around 10 days after starting your radiotherapy. It may become dry and itchy, especially around your ears. For a very small number of patients, it may peel and become weepy. Avoid hair removal where possible, including shaving, waxing, cream and lasers unless advised otherwise by your consultant, nurse or radiographer.

Before you start your treatment, a radiographer will explain what could happen to your skin and how to look after it. They will also give you a leaflet to take home.

If you are concerned about your skin reaction please talk to your radiographers or contact the review clinic nursing staff in the Princess Royal Suite, telephone: 0113 206 7587.

Headache, nausea and vomiting

During your first few treatments you may experience headaches and nausea. Vomiting together with these two symptoms is uncommon, however if you do have any problems please inform your nurse, radiographer or doctor.

Anti- sickness medication may be prescribed if necessary.

Your ears may also feel temporarily blocked causing deafness.

Long term side-effects

There is a small chance that radiotherapy will affect the function of the brain. It can increase the chance of developing problems with your memory, movement, or ability to think or reason (cognitive function). If you are being offered radiotherapy to the brain, your team believe that the benefits of treatment outweigh the risks of damage to the brain. If you are worried about this, please discuss it with your doctor.

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 about 4-6 weeks after treatment but it may take a little longer.

Tiredness can last for several months and you may need to continue to rest more than usual.

You may be asked to attend the hospital where you were first seen by your oncologist for follow-up checks at regular intervals. This will vary according to the area you have had treated.

Please discuss this with your doctor if you have any concerns.

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, and 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 who 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. They can refer you to other services if needed, for instance, benefits advice.

You should be given a ‘key worker’ as a contact for support through your treatment; this is usually your CNS.

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 treatment.

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

This centre offers a variety of free health & wellbeing and supportive therapies for patients, their family members and carers. These include hypnotherapy, mindfulness coaching, acupuncture (for hot flushes) and pilates.

Contact numbers for Leeds Cancer Support

Information Lounge Level -2 Radiotherapy Department
Open from 8.00am – 6.00pm Tel: (0113) 206 7603

Information Centre Level 1 Outpatients Department
Open from 9.00am – 4.00pm. Tel: (0113) 206 8816

Sir Robert Ogden Macmillan Centre
Open from 9.00am – 4.00pm. Tel: (0113) 206 6498

All the above services can be emailed on:
[email protected]

Maggie’s Centre

If you or someone you love has cancer you may have lots of questions. Maggie’s is a warm, welcoming place where you can meet people who are experiencing similar things to you.

You may also be able to find support groups specific to your needs and get advice and information from their professional staff.

You don’t need an appointment and all support is free.

Open Monday to Friday 9.00 am – 5.00pm. Tel: (0113) 457 8364

Address: St James’s Hospital (next to the multi storey car park),
Alma Street, Leeds LS9 7BE
Email: [email protected]
Website: maggiescentres.org

National Support Organisations

Macmillan Cancer Support

Freephone 0808 808 0000 8am- 8pm seven days a week.
Website: www.macmillan.org.uk
A textphone service for deaf and hard of hearing people on: 18001 0808 808 0000.

Stopping smoking

NHS Free Smoking Helpline: 0300 123 1044 Monday to Friday 9am to 8pm, Saturday and Sunday 11am to 4pm.
Website: www.nhs.uk/smokefree

The Roy Castle Lung Cancer Foundation

Telephone: 0333 323 7200
Website: www.roycastle.org

Live Through This

A cancer support and advocacy charity for the LGBTIQ+ community.
Email: [email protected]
Website: https://livethroughthis.co.uk

Hotel Bexley Wing

Patients having radiotherapy or chemotherapy sometimes use the hotel if they have a long way to travel. The hotel is located on the 8th floor of Bexley Wing and offers 19 twin rooms and 1 single room. All have en-suite, tea and coffee making facilities, a mini fridge, towels, hairdryer and digital television. There are two rooms with wheel chair access and a wet room. Patients are able to stay free of charge. There is a charge for relatives if they are staying in their own room.

Meals can be purchased (at breakfast and lunch) if you are able to make your way to the restaurant in the Bexley atrium. At other times you will need to have something you have brought from home or purchased.

There is a very small fridge for your personal use. There are no staff after 4pm until the next morning in this facility.

For further details please contact the Hotel Co-ordinator on 0113 206 7687. Out of hours please contact the Non-Surgical Oncology Nurse Practitioner through main switch board on 0113 243 3144.

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.

How to find us

St James’s University Hospital – site plan