Series No 13 - Radiotherapy to the adult spine

During your time with us we aim to provide the highest standards of care and support you in your decisions regarding your treatment. We will respect your dignity, individuality and personal preferences.

Your care will be managed and given by therapeutic radiographers, doctors and nurses. You will meet both male and female healthcare professionals during the course of your treatment. If you have any concerns about this, please talk to the radiographers about it. We try to be sensitive to your needs, so please do not hesitate to discuss things with the team caring for you.

All individuals with internal reproductive organs (a uterus) of child-bearing ability (12-55 years old) will need to sign a form to confirm there is no possibility that you could be pregnant. You must tell the staff immediately if there is any chance of you being pregnant at any time during your treatment. Individuals should not become pregnant for at least four months after radiotherapy treatment.

Individuals with external reproductive organs (testes) should not conceive a child for at least four months after radiotherapy treatment. All patients should use reliable contraception throughout this period. If you have any further questions or concerns about this please talk to your radiotherapy doctor, your specialist nurse or specialist radiographer involved in your care.

Radiotherapy is the specialised treatment of cancer (and some other diseases) using high energy radiation beams. These can either be x-rays (also called photons), electrons or protons. X-rays and electrons are delivered from a machine called a linear accelerator whilst protons are delivered from a machine called a cyclotron.
 
From 2021 University College Hospital Trust will have a proton beam therapy (PBT) service. However, it is not appropriate to treat all kinds of cancers with proton beam therapy. This will be decided by your clinical oncologist and discussed with you.

Radiotherapy does not hurt, and it will not make you radioactive. You will be completely safe to be around family, friends and pregnant women. You will feel nothing from the treatment and the machine will not touch you. It is rather like having an ordinary x-ray. The most important thing is for you to lie very still for treatment.

Patients will normally receive their treatment as an outpatient, with a course of treatment lasting three to six weeks. Your exact treatment schedule will be decided by your doctor and confirmed on your first visit to the radiotherapy department.

Everyone’s treatment is different and is planned individually.

Planning treatment to the cervical spine (neck)

Before beginning radiotherapy, your treatment must be carefully planned. To ensure your treatment is accurate, you will have a personalised mask made of your head and neck. You will wear the mask each day during your treatment. Your first appointment(s) will be to have the mask made and to have a radiotherapy CT planning scan.

The mask has three purposes:

• To help you keep still during your treatment
• To ensure you are in exactly the same position each day for treatment
• To prevent having to draw treatment marks on you, as they are drawn on the mask instead.

To make the mask, a thermo-plastic material is used which is hard when dry and is heated to allow it to soften. This is placed over your head and shoulders and held in position, for twelve minutes, until it begins to harden. Once the mask is made you will have a radiotherapy CT planning scan. This scan locates the exact area to treat in relation to surrounding normal tissue.

You will be positioned on the scanner couch lying on your back wearing your mask. The radiographers will mark lines on your mask. These will be used to ensure you are in the correct position each day for your treatment. The scan will take approximately 5-10 minutes.

You may have some dye (also called contrast agent) injected in to your arm via a temporary cannula. The dye makes the images clearer for planning your treatment. If you need this, the radiographers will explain what is happening before and during the process.

If you are having proton beam therapy you will also have an MRI whilst wearing your mask. If you need an MRI, this will be detailed in your appointment letter. The MRI scan process is very similar to the CT scan. An MRI scan normally takes 30 to 40 minutes. The radiographers will talk you through the process so you know what to expect.

You will feel nothing in either scan. All we ask is that you lie still and breathe normally. After the scan(s) is/are completed, you will be free to leave. Before you go, you will be given an appointment card with the date and time for your next visit, which will be your first radiotherapy treatment.

Planning treatment to the thoracic and lumber spine (upper and lower back)

You will be positioned on the CT scanner couch lying on your back with supports under your head knees and ankles. Your arms will be positioned either by your sides or across your chest. The radiographers will ensure your body is straight.

They will then place some temporary marks on your skin using felt tip pens. They will then place sticky wire markers on these marks which will show up on
the scan. The scan will take about five minutes, during which time you can breathe normally.

Once the scan is complete the radiographers will mark three or four specific points on your chest/pelvis. These are the co-ordinates for your treatment and ensure repeatable treatment accuracy on a daily basis. The points are permanent and are made by placing ink on your skin and gently scratching the surface of the skin with a fine needle.
 
If you are having proton beam therapy you will also have an MRI whilst wearing your mask. If you need an MRI, this will be detailed in your appointment letter. The MRI scan process is very similar to the CT scan. An MRI scan normally takes 30 to 40 minutes. The radiographers will talk you through the process so you know what to expect.

You will feel nothing in either scan. All we ask is that you lie still and breathe normally. After the scan(s) is/are completed, you will be free to leave. Before you go, you will be given an appointment card with the date and time for your next visit, which will be your first radiotherapy treatment.

Some patients will be given drug treatment (chemotherapy) before or during their radiotherapy. The chemotherapy increases the activity of the radiotherapy against cancer cells. Your doctor will tell you which chemotherapy you will be having.

Patients receiving chemotherapy in addition to radiotherapy may experience more severe or additional side effects to those listed here, depending on the drug regimen used. It is possible the use of chemotherapy may increase the likelihood of nausea with your treatment. It may also cause small ulcers in the mouth. The doctors will discuss these issues with you.

You will be given detailed fact sheets about the chemotherapy drugs and their side effects by the chemotherapy nurses. If you have any concerns or further questions, please do not hesitate to ask for help.

The radiotherapy treatment is daily, Monday to Friday. Your clinical oncologist will have already told you how many treatments you will be having. The treatment radiographers will explain the procedure to you and answer any questions you may have. For each treatment session you will be lying on your back on the treatment couch. If you are having your cervical spine (neck) treated you will be wearing your mask. If you are having treatment to the thoracic spine (upper back) or lumbar spine (lower back) you will be lying on your back with supports under your head knees and ankles. Your arms will be positioned either by your sides or across your chest.

The radiographers will ensure you are in the correct treatment position by aligning the marks on your mask or the permanent marks on your chest or pelvis with laser lights. They will then move the treatment machine and couch into position using your personal treatment plan.

When final treatment checks have been made, the radiographers leave the room. To give you the best treatment you will be treated from several different angles. The treatment machine will move around you, but will not touch you. You will not feel anything and you do not have to hold your breath. All we ask is that you keep still.
The radiographers will be watching you at all times on a closed circuit television.

Treatment time is dependent on whether you are having radiotherapy with photons or with protons. If you are having photon treatment then each session takes approximately 15-20 minutes. If you are receiving proton beam therapy then the treatment may be a little longer and can last up to 45 minutes. The treatment radiographers will confirm with you how long the treatment is expected to take before they start.

Although you will not feel anything during treatment, there will be some side effects which will gradually appear during your course of radiotherapy. These effects will vary from patient to patient. There are side effects occurring during treatment, some happening soon after treatment, and some appearing months or years after radiotherapy.

The risk and severity of side effects occurring will depend on the dose of radiotherapy given and the exact area which receives the radiotherapy. Your doctor will discuss the risks of treatment with you before you sign a consent form.
However, there will still be plenty of opportunity to talk about anything that you feel needs further discussion. The main side effects that occur during treatment are:
 
Skin changes
Your skin in the area being will gradually change colour. Your skin will gradually become pink/red or darker, depending on your skin colour. You may get some dry peeling of the skin in the treatment area, which may become flaky and itchy.

During treatment we advise that you wash normally using warm water and the soap products you would normally use. Gently pat your skin dry with a soft towel.

Radiotherapy skin reactions cannot be prevented, but to minimise any skin irritation we recommend using a moisturiser of your choice. Use the moisturiser frequently and gently smooth it on to your skin until it is absorbed. You do not need to wipe the moisturiser off before treatment, but please do not apply moisturiser immediately before their treatment.

If your skin becomes irritated or sore, stop using the moisturiser. You will be referred to the radiotherapy review team for appropriate skin care. If you do not use a moisturiser, speak to the radiographers and they will be able to suggest a few options.

Sore throat
If you are having radiotherapy to the cervical spine (neck) or thoracic spine (upper back) you may experience a mild discomfort when swallowing food. This is a normal reaction as the radiotherapy irritates the gullet. In most cases you will still be able to eat and drink normally. Some people may require oral medication to ease the discomfort. If you are having difficulty eating and drinking please speak to a member of staff.

Feeling sick (nausea)
Feeling sick is unusual during radiotherapy treatment, although some patients, particularly those who are receiving chemotherapy, may feel sick and sometimes be sick. This can be well controlled with anti-sickness medication. If you are experiencing any symptoms please speak to a member of staff who can refer you to the doctor for medication.
 
Diarrhoea
You may experience diarrhoea if you are having radiotherapy to the lumbar spine (lower back). This is due to the radiation irritating the bowel. You may also experience wind pains and/or cramping sensations. If you are experiencing diarrhoea, it is important that you try to maintain a good fluid intake. Try to drink at least one to two litres of fluid a day. This can include water, squash or hot drinks. You may be prescribed regular anti-diarrhoeal medication whilst you are on treatment. If the diarrhoea persists or becomes severe the doctor will prescribe stronger medication. The radiographers will also offer advice on nutrition or refer you to the dietician, who can offer advice on maintaining a nourishing and pleasant diet.

Hair loss
There may be a loss of hair at the back of your neck if this is in the treatment area. The hair usually starts to grow back about three months after treatment, the new growth often being slightly different in colour and texture. However, hair might not grow back in the areas which have had a high dose of radiation. The doctors will advise you about this.

Blood and bone marrow system
Treatment of the spine can affect your bone marrow. Bone marrow makes blood cells and is found in the centre of bones such as the spinal bones. The white blood cells (which fight infection), red blood cells (which carry oxygen around the body) and platelets (which are important for blood clotting) might be affected. You will have regular blood tests if a long portion of your spine is being treated. You will be informed of the number of blood tests required at the start of your treatment.

Tiredness (fatigue)
Tiredness is a very common side effect of radiotherapy. You may feel more tired than usual and have less energy, both during and after treatment. Do not worry, this is normal. It is usually a combination of travelling to hospital every day, the side effects of treatment, coping with a diagnosis of a tumour and continuing with normal life.

We recommend that you listen to your body. Do as much as you feel you can and rest when you need to. However, gentle exercise has been found to improve fatigue levels in patients and we would recommend walking as a good form of exercise.

Please let someone know if you are finding things difficult, as they will be able to offer practical advice.

At your first treatment appointment the radiographers will discuss the treatment with you and explain any possible side effects you may experience. They will see you every day and ask how you are and how you are feeling.

During treatment you will be seen regularly by your clinical team and/or specialist radiographer who will monitor your side effects and review your progress.

Late side effects incurred during treatment can appear to develop months or years after radiotherapy has finished. They are the hardest to predict and, unfortunately, when they do occur they are permanent. Some, however, like hormone deficiencies are very easy to treat and routine follow-up can prevent symptoms occurring. Your radiotherapy doctor will have explained to you the potential late side effects of radiotherapy as part of the consent process. These may include:

Lung function
It is possible for lung function to be affected by the radiotherapy treatment if you have received radiotherapy to the thoracic spine (upper back). This can take two forms:

• Six to twelve weeks after radiotherapy you may experience some shortness of breath and a dry cough. This may be due to radiation pneumonitis, which may be treated with a short course of steroids and usually recovers completely. In most people symptoms never occur.
• There may be some long-term effect on your breathing. This is very unusual, but if it occurs, it tends to be noticeable on moderate to severe exercise only.

Heart
If you have received radiotherapy to the thoracic spine (upper back) the heart may also be in the treatment field. Usually the radiation doses given are too low to cause a problem. Your doctor will discuss this side effect with you if it is relevant to your treatment.

Thyroid gland
The thyroid gland (in your neck), if it is included in the treatment area, can be affected by the treatment. Your thyroid may become swollen or feel lumpy. It may also become underactive or, very rarely, it may become overactive, many years after your treatment has finished. You will be carefully monitored by your medical team after your radiotherapy treatment has finished. If a thyroid dysfunction is detected or if you experience swelling, fatigue (symptoms of an underactive thyroid) or weight loss and hyperactivity (symptoms of an overactive thyroid) all these symptoms can easily be treated.

Female fertility
For women who have radiotherapy to the lumbar spine (lower back) the ovaries and the womb may be near the treatment area. We are careful to minimise the risk to the ovaries, but sometimes we cannot avoid them receiving some radiation. This can lead to sub fertility (reduced egg production) which may be temporary or permanent. The doctors will discuss this with you. If you wish to discuss this further please feel free to ask to see a specialist before your radiotherapy treatment begins.

Male fertility
The testicles are usually away from the treated area. However, if you are having treatment to the lumbar spine (lower back) small doses of radiation can scatter there. The doctors will be able to tell you if the dose to your testicles is likely to cause sub-fertility (reduced sperm production) or infertility (absent sperm production), or affect the production of the male sex hormone testosterone which is important for potency. Your doctor will talk to you about this, if it is relevant to you.

Kidneys
Radiotherapy may affect the kidneys, if they are near the treated area. We are careful to minimise the risk to the kidneys but often cannot avoid them receiving some radiation. Your kidney function will be closely monitored at follow-up.
 
Osteopaenia (low bone density)
Low bone density can occur for a number of reasons. These can include immobilisation, poor nutrition, low calcium, steroid therapy as well as radiotherapyto the skeleton. Weight bearing exercise, eating a healthy diet and timely hormone replacement therapy can all prevent osteopaenia occurring.

Transient radiation myelopathy
This is also called L’hermitte’s Syndrome. The doses that we use to treat spinal tumours are designed to prevent long term damage to the spinal cord, but sometimes patients may notice some nerve symptoms related to treatment. The radiation can cause a temporary inflammation of the membrane surrounding the spinal cord. Within four to six weeks after the end of treatment you may experience tingling or a feeling of pins and needles in your arms and legs. This is not a sign of serious nerve damage and recovers without treatment. These symptoms can take four to six months to settle.

Second malignancy
Very rarely, people who have received treatment for one particular tumour may develop another type of tumour some years later. The radiotherapy doctors will discuss this with you if it is relevant.

This information deals with the physical aspects of your treatment, but your emotional wellbeing and that of your family are just as important. Having treatment can be deeply distressing for some patients. Within the radiotherapy department there will be access and support from your specialist nurse, the specialist radiographer, the radiotherapy review team, the treatment radiographers, and the Macmillan information and support team. However, if you feel you require further medical or emotional support, you can be referred to a variety of health professionals who can help with any worries or difficulties you may be having.

All staff are here to make sure your treatment goes as smoothly as possible and to support you through this difficult period. We will try to help you with any questions or problems you may have.

After you have finished your treatment you will be given a follow-up appointment for four to six weeks’ time. This will be at University College London Hospital, or your referring hospital. If you have had radiotherapy only, you will have a baseline post- radiotherapy MRI scan six to eight weeks after your radiotherapy has ended. If you are having combined radiotherapy and chemotherapy treatment, you will have a scan once chemotherapy is completed (in approximately seven months). The first post treatment scan will not show how effective the treatment has been, but it will be used to compare with any future scans you have.

The side effects you may have experienced will continue after treatment has finished. It is common to experience a worsening of the skin reactions for about ten to fourteen days after radiotherapy. Please feel free to contact the radiotherapy review team, your specialist radiographer or specialist nurse if you are worried about your treatment side effects.

Contact your Clinical Nurse Specialist (Key worker) via the Brain Tumour Office at The National Hospital for Neurology and Neurosurgery:

Name of Clinical Nurse Specialist:
Telephone: 020 3448 8830

For general enquiries contact The Brain Tumour Unit 
Telephone: 020 3448 8830
Email: uclh.braintumourunit@nhs.net

Macmillan Specialist Sarcoma Radiographer 
Mobile: 07929176789

Proton Beam Therapy Reception
Telephone: 020 3456 8000/8001

Proton Beam Therapy Review Team (via Proton Beam Therapy Reception) 
Telephone: 020 3456 8000/8001

Radiotherapy Reception 
Telephone: 020 3447 3700/3701

Radiotherapy Review Team (via Radiotherapy Reception) 
Telephone: 020 3447 3700/3701

Out of hours oncology advice number (available 24 hours) 
Mobile: 07947 959020

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: 020 3447 3042
Website: www.uclh.nhs.uk

The Brain Tumour Charity 
Telephone: 0808 800 0004
Website: www.thebraintumourcharity.org

Brains Trust
Telephone: 01983 292 405
Website: www.brainstrust.org.uk

Brain and Spine Foundation 
Telephone: 0808 808 1000
Website: www.brainandspine.org.uk

Brain Tumour Support 
Telephone: 01454 422701
Website: www.braintumoursupport.co.uk

Sarcoma UK
Telephone: 0808 801 0401
Email: supportline@sarcoma.org.uk
Website: www.sarcoma.org.uk

Young Lives vs Cancer (formerly CLIC Sargent) 
Telephone: 0300 330 0803
Website: www.younglivesvscancer.org.uk

Macmillan Cancer Support 
Telephone: 0808 808 0000
Email: cancerline@macmillan.org.uk
Website: www.macmillan.org.uk

Cancer Research UK 
Telephone: 0808 800 4040
Website: www.cancerresearchuk.org

Carers UK
Telephone: 0808 808 7777
Email: adviceline@carersuk.org
Website: www.carersuk.org

NHS Choices Website: www.nhs.uk

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