nThe Leeds

Teaching HospitalsNHS Trust

Radiotherapy for Malignant Spinal Cord Compression (MSCC)

Information for patients

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This leaflet aims to help you and your family understand more about your radiotherapy treatment.

This leaflet will be given to you in addition to the information you will receive from your clinical oncologist (a specialist doctor in cancer treatment). Their team will be caring for you during your treatment. This team will include radiographers and nurses, but may also include social workers, physiotherapists and occupational therapists.

The leaflet describes radiotherapy planning and treatment. It also explains the side-effects that 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 this 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 (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.

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What is MSCC?The spinal cord is the chain of nerves that sits within the backbone (spine/vertebrae). The nerves for all parts of the body, including the legs, arms, bladder and bowel branch from the spinal cord.

MSCC occurs when cancer grows in or near the spine and presses on the spinal cord and nerves. This can result in muscle weakness, altered sensation, or bladder and bowel disturbance. Your doctor is concerned that you have MSCC or are at risk of developing this condition. Radiotherapy treatment is recommended for this.

What is radiotherapy?Radiotherapy is the use of high energy X-rays to treat cancer. The tissues of the body are made up of tiny building blocks called cells. Radiotherapy causes damage to the cancer cells in the treated area. Although normal cells are also affected, they can repair themselves and are able to recover. Radiotherapy is local treatment, meaning 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 pregnant women throughout your treatment.

Spinal cord

Nerves

Vertebra(backbone)

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You will have your treatment on a machine called a Linear Accelerator, pictured here.

Who will I meet?

Doctor

Your doctor will discuss the benefits of radiotherapy treatment and how it can help to improve symptoms you are experiencing. They will also discuss potential side effects that can occur. When they are satisfied that you understand what has been discussed, the doctor will request your consent to proceed with radiotherapy treatment.

In some circumstances you will meet your doctor to discuss your radiotherapy treatment and give consent prior to arriving at St James’s Hospital.

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Therapeutic radiographers

Radiotherapy is given by therapeutic radiographers of any gender, who are highly trained in the accurate planning and delivery of radiotherapy treatment. 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

Pregnancy

It is very important that patients of child bearing 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.

What to bring with you:

• a list of all the 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, including over the counter medicines you are taking;

• something to eat and drink and something to occupy yourself with (you may be with us for much of the day).

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Planning Your Treatment

Mould Room

If your cord compression is in the top of your spine a radiotherapy mask may be made to ensure you stay still during your treatment.

Please note: If you are having treatment to a different part of your body, a mask is not needed.

Your Planning ScanIn 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.

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

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The scan will be taken with you lying in the same position as for your treatment. The radiographers will draw some marks on you, to be used as a reference for your treatment.

The scan will only take a few minutes, and it is important for you to stay as still as you can so please ask if you need extra painkillers.

You will then be scanned, which willonly take a few minutes and at the end of the scan the skin mark will be replaced by a small permanent mark (tattoo).

These marks will be used for your treatment. These permanent marks help us to set you up and deliver your treatment with accuracy.

Having your treatmentYou will usually have treatment on the same day as your planning scan. There is a break in between the planning scan and your treatment. This is to enable us to plan your treatment accurately and safely. Whilst we are planning your treatment, you may spend some time on a ward where the nursing team can assist you. Depending on your needs, you may be able to stay in our department.

When it is time for you to have your treatment, the radiographers will position you on the treatment couch in the same position as you were in for your planning scan.

Permanent ink mark next to a five pence piece

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You will be asked to stay as still as possible during your treatment, but you should breathe and swallow normally.

The radiographers will leave the room to switch on the machine, but are watching you on closed circuit TV (CCTV) monitors. The CCTV camera is not recording or saving any images. There is also an intercom system so the radiographers can talk to you.

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.

In position on the radiotherapy

machine

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Side-effects of Radiotherapy

General side-effects

Tiredness (fatigue)

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

Pain

You may experience increased pain called a ‘pain flare’, soon after treatment. You should continue to take any medication you are taking for pain relief. Occasionally this may need to be increased for a short period and you should contact your GP, District Nurse or Macmillan Nurse to arrange this.

You may find your pain improves within days of treatment and you could find that it takes several weeks to feel the benefits of treatment.

Skin reaction

The skin in the treated area may turn red and become itchy soon after treatment. Before you go in for your treatment the radiographer will explain what will 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.

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Site specific side effects (depending on where you are being treated)

Sore mouth

Treatment of your neck area can cause inflammation of your mouth which can be sore. You can take painkillers if necessary and avoid very hot/cold/spicy food and drink for a few days.

Difficulty swallowing

Treatment to the upper spine (neck and chest) may inflame your gullet and could cause some temporary soreness when you swallow.

Nausea and vomiting

This can occur when having the lower part of your spine treated. This can often be prevented by an anti-sickness tablet taken before you have your treatment and your doctor will prescribe this if you are at risk.

Cough

Treatment to the upper spine may cause a temporary cough.

Diarrhoea

Treatment involving your tummy can cause temporary diarrhoea. Painkillers and some anti-sickness medication can help this. Over the counter medication such as Imodium (loperamide) can be taken as instructed on the box.

Cystitis

This feels similar to a bladder infection and is temporary. Painkillers or anti-inflammatories can be taken if required.

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What will happen after my radiotherapy?Your on-going care and discharge plans may continue at a hospital nearer to your home, where planning about your future care will continue.

What can I expect?

The aim of radiotherapy is to help control your symptoms and aims to prevent further deterioration in your neurological (nerve) symptoms. MSCC affects each patient differently. Your recovery following radiotherapy will depend on your level of fitness before MSCC. However many people need some level of assistance with mobility after treatment. Your healthcare team aims to help you become as independent as possible and will discuss this with you.

Could MSCC happen again?

Unfortunately, for some patients, MSCC can occur again affecting a different part of the spine. If your symptoms return, or worsen, you will need to contact us immediately.

It may be appropriate for you to have further radiotherapy.

Contact:

• Your oncology wards emergency contact number.

• If you are a Leeds patient - the Oncology bleep holder Tel: 0113 243 3144 - ask for the Oncology Patient Bleep holder.

• Out of Hours GP

• Emergency Department - please take this leaflet with you.

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Further support

If the information in this leaflet has caused you any anxiety you may want to speak to somebody about this. This could be your Clinical Nurse Specialist (CNS) or Key Worker or you can contact any of the support services listed below. The Palliative Care Team, CNS or Key Worker details are for non-urgent advice and support.

The Sir Robert Ogden Macmillan Centre

The Robert Ogden Centre provides an environment where patients and their families can drop in for a drink, take some time out, or just a chat. The centre also offers a variety of support services including support groups and complementary therapies.

Contact: The Sir Robert Ogden Macmillan Centre,St James’s University Hospital Beckett Street, Leeds LS9 7TF

Tel: 0113 206 6498 email: leedsth-tr.Cancersupport@nhs.net

Community Palliative Care Team at St Gemma’s Hospice

Tel: 0113 218 5500 Website: www.st-gemma.co.uk

Community Palliative Care Team at Wheatfields Hospice

Tel: 0113 278 7249 Website: www.sueryder.org

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Chaplaincy

A chaplain is available for patients who need support, to answer questions about faith, or simply need to talk to someone about the experience of being in hospital. Chaplains are available from a number of church and faith traditions and are supported by a team of volunteers.

You can see a chaplain at any time, please ask a member of staff to contact the Chaplaincy Team.

The Faith Centre is based on Level 1, Bexley Wing and is open 24hours a day. There is a Multi-Faith Prayer Room where regular services are held. Messages for the Chaplains can be left at the Faith Centre, or by calling 0113 206 4365.

Macmillan Cancer Support

Freephone 0808 808 0000, 8am - 8pm seven days a week.

A textphone service for deaf and hard of hearing people on 18001 0808 808 0000

Website: www.macmillan.org.uk

Live Through This

A cancer support and advocacy charity for the LGBTIQ+ community.

Email: contact@livethroughthis.co.uk

Website: https://livethroughthis.co.uk

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Car Parking

Parking for radiotherapy planning and treatment is free.

• On entering the car park take a ticket and park as usual (disabled parking spaces are on Level 0).

• When exiting use the left hand lane next to the ticket office. Take your parking ticket and appointment letter to the attendant. They will process your ticket so that when you insert it at the barrier no charge will be made.

• If you need assistance or are unable to leave your car please press the button on the barrier.

RefreshmentsThere is a restaurant and coffee shop available on Level 0, which are open daily. They serve drinks, light snacks and hot meals. Vending machines are also available in the main radiotherapy waiting room and Level 0. There is also a shop on Level 0 with books, papers and snacks.

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Map of Leeds showing Leeds General Infirmary (LGI) and St James’s University Hospital (SJUH)

St James’s University Hospital site plan

Gledhow Wing1

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Lincoln Wing

Bexley Wing

Chancellors Wing

Robert Ogden Centre

LN003784

Publication date05/2021

Review date05/2023

© The Leeds Teaching Hospitals NHS Trust • 4th edition (Ver 1)

Developed by: Dr Lisa Owen, Dr Juliette Anderson, Consultant Oncologists,Helen Melling Macmillan - Radiotherapy Advanced Practitioner and Robin Graham - Radiographer

Produced by: Medical Illustration Services • MID code: 20210505_004/DG

charity number: 1170369

The printing of this leaflet has been funded by Leeds Hospitals Charity leedshospitalscharity.org.uk

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