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Information for patients having radiotherapy for brain tumours

Introduction

The process of informed consent requires patients to receive written information to help them to make a decision about treatment.

This page is a written version of the information your cancer specialist (oncology) doctor has told you about radiotherapy for a brain tumour. It includes sections on the most commonly asked questions about the treatment procedure and the side effects which may occur with this type of treatment. We hope it will help you in making your decision about radiotherapy treatment.

Whilst it is important to make you aware of side effects associated with the treatment it is equally important to put this into perspective. We hope this information will help you to consider the benefits of having adequate treatment now against the risks of later side effects of radiotherapy treatment.

This page is only a short summary. Throughout the process the doctors, radiographers and nurses will be there to explain what will happen in more detail and to answer any questions you may have.

 

If you need further advice please do not hesitate to ask. The bottom of this page has further suggestions of where you may wish to go for help.

If at any time you think you may be pregnant, please inform your radiographer/consultant as soon as possible.

 

What is Radiotherapy?

  • Radiotherapy is the use of high energy x-rays to treat cancer. The x-rays are produced by a machine called a linear accelerator and are able to damage and destroy cancer cells within the treatment area.

  • Radiotherapy also affects normal cells in the area being treated, but they are generally more able to recover than cancer cells.

  • Treatment is usually given regularly over a period of time to have the greatest effect on the cancer cells whilst limiting the damage to normal cells.

 

When is it used? 

Radiotherapy is used:

  • After brain surgery, to treat any cancer cells that may have been left behind.

  • Where surgery is not possible or where the tumour has re- grown after surgery.

 

How is it given?

Radiotherapy is normally given in daily sessions - Monday to Friday as an outpatient and weekends off. The length of your treatment schedule will be discussed with you by your oncology doctor.

Radiotherapy should be given as a continuous daily treatment and therefore appointments ideally should not be missed. If you are too unwell or have an emergency and unable to attend your appointment, you should inform the radiographers as soon as possible.

If any scheduled ‘breaks’ are required during your treatment, such as Bank Holidays etc. you will be informed prior to starting your treatment

 

Is there any preparation for the procedure?

To make the treatment as accurate as possible, a Perspex mask (sometimes called a shell) is made for you to wear during treatment. This mask/shell will fit closely over your face and head to help you keep still during the radiotherapy.

You will be contacted with appointment dates to attend the mould room (in the oncology department) to have your mask made.

You will be able to see and breathe normally whilst wearing the mask/shell although some people find the process of having it made and the wearing of it claustrophobic. We will do everything we can to make sure you are comfortable in the mask whilst ensuring the accuracy of your treatment.

 

Planning your treatment

The aim of treatment is to treat the tumour whilst sparing as much of the surrounding healthy tissue as possible where it is safe to do so. To do this an individual plan is prepared for each patient. You will have a CT scan whilst in your radiotherapy mask and this will be used to prepare and plan your treatment.

CT contrast agent is used to enhance the images produced by CT scans to help with the planning of your radiotherapy treatment. Contrast agents are also called “contrast mediums” and “dyes”. There are different types of contrast agent that can be used. Some are given by injection into a vein (intravenously), others are swallowed.

If this is something that you require, your oncology doctor will talk to you about this and may send you for a blood test prior to your planning appointment.

 

What does the treatment involve?

It takes approximately between 10 and 20 minutes to position and treat you. The treatment is given using a machine called a linear accelerator. You lie on a treatment couch. The radiographers position you using laser lights and marks that have been put on your skin or treatment mask.

Once you are in the correct position the radiographers will ask you to stay very still and breathe normally. The machine may be re-positioned (to different angles) during the session by the radiographers. X-Ray pictures will be taken before the radiation beam is switched on. This will allow the radiographers to ensure accurate positioning and treatment delivery.

You will be in the room on your own whilst the radiation beam is on. The treatment team will monitor you on closed circuit television. If at any time you want the attention of the staff, you will be asked to raise your hand.

 

Will I be radioactive?

No. As soon as the radiation beam is completed all the radiation disappears. Once the treatment is finished you will be free to go home. It will be perfectly safe to be with other people including children.

 

Will the procedure be painful?

The treatment itself is totally painless. There is nothing to see or feel - you will hear the machine buzzing.

The treatment couch is quite firm to ensure accuracy but you will be made as comfortable as possible in the treatment position.

 

What side effects can I expect?

The effect of radiotherapy is dependent on the dose that is prescribed, the length and area of your treatment as well as whether you are having any chemotherapy. If you are, then this may have additional effects.

For most patients, side effects usually settle after a few weeks or months but it is possible that some side effects may be permanent and require further medical intervention.

The review radiographer team will be able to advise you on how to ensure side effects are kept to a minimum and any self-help measures. If necessary there are various medications that can be prescribed to help, so it is important to let staff know if you develop any problems.

For the majority of patients, some level of tiredness can be experienced. It is important to keep hydrated and ensure that you rest as and when necessary.

 

Short Term Side effects

 

  • Fatigue (Chronic Tiredness)

Radiotherapy can make you feel very tired. The tiredness may start during your treatment and continue after radiotherapy has finished. It is important to rest as much as you can.

You may find that a few months after treatment you experience some drowsiness (somnolence) when you feel like not doing anything at all. Although this is quite distressing it will gradually fade.

 

  • Hairloss

You will lose your hair in the area that is being treated. Hair should begin to grow back after a few months after the treatment is over. Hair re-growth may be a little patchy, particularly when it first starts to re-grow. Sometimes, hair grows back with a slightly different colour and texture and perhaps not as thickly as before. In the meantime, hats, wigs or hairpieces are some practical suggestions for coping with hair loss. Please ask a member of staff to discuss this with you, as there is a wig service available.

 

  • Skin Reaction

During and after your radiotherapy treatment your scalp may become dry, itchy, red and tender. It is advisable to protect your head from both the sun and cold weather. You may want to wear a hat. You will find it more comfortable to have a hat made of natural fibres e.g. cotton or silk, while you are having the treatment.

You should you a mild or baby shampoo with luke-warm water when washing your hair. Allow hair to dry naturally. Do not use hair colourants, perming solution, mousse, wax or hairsprays.

Apply a gentle non-fragranced moisturiser twice a day to your scalp. Apply with your finger tips and allow to soak in rather than rubbing.

Following treatment your skin will be very sensitive to sunlight. Using a high factor sun cream is essential in protecting the area from future sun damage.

 

  • Headaches and Nausea

You may feel sick and have an altered sense of taste. Radiotherapy may cause some swelling of the brain tissue which can result in headaches and visual disturbances. Please inform the radiographers of this as your consultant may be able to prescribe medication to help.

 

Long Term Side effects

 

Late changes that can occur will depend on the area and amount of brain tissue irradiated. These might include:

  • Fluid build-up behind the eardrum - this can cause deafness, but will usually improve.

  • Impairment of memory, and decreased intellect.

  • Personality changes.

  • Changes to your vision and endocrine system causing hormonal disruption.

  • The rare chance of a separate tumour developing in the treated area.

 

These symptoms may be caused by both radiation changes in the brain tissue as well as tumour re-growth. Your oncologist will discuss these effects with you before treatment commences.

 

Emotions and Driving

We all have our own ways of coping with difficulties. It is important for you to know that help and advice is available, should you need it, for you, your family and carers before, during and after your treatment. If you are struggling to cope emotionally there are various options open to you. You may find that talking about it with your treatment team is a good place to start.

Information is available from the Cancer Information and Support Centre about what to expect and how to cope with the emotional effects of cancer. You may like to talk to the Macmillan nurse (or clinical nurse specialist) about how you are feeling, or you may like to ask for a referral to the clinical psychologist.

 

Driving and DVLA

If you have a brain tumour, the law requires you to notify the Driver and Vehicle Licensing Authority (DVLA).

 

By phone

DVLA drivers’ medical enquiries Telephone: 0300 790 6806 Monday to Friday, 8am to 5:30pm Saturday, 8am to 1pm

 

By post

Drivers’ Medical Enquiries
DVLA
Swansea
SA99 1TU

More Information can be found at https://www.gov.uk/brain-tumour-and-driving or you can contact your Macmillan nurse specialist for more information.

 

If you have further questions

If you are at all concerned about the treatment, what it involves and what it means for you, do not hesitate to ask at any time.

You will find a number of contact names and numbers at the bottom of this page.

 

Further advice about your treatment

If you are unsure about any aspect of your treatment, please ask your oncology doctor, Macmillan nurse specialist or radiographer.

 

For advice or further information you can visit the Macmillan Information Centre located in the Centre for Oncology (Ground Floor). Opening times: Mon-Fri 9.00am to 4.00pm - No appointment Necessary or telephone 01604 544211

 

Macmillan Cancer Support

Your Macmillan Neuro-Oncology Clinical Nurse Specialist is available to support patients, their families and carers by providing information about treatments and investigations. The contact number during office hours is Telephone (01604) 523880.

You may call at any stage before, during or following your treatment. The service is available Monday - Friday 9.00am - 4.00pm. If you would like to speak to someone outside the hospital for advice or information Macmillan can be contacted via the website www.macmillan.org.uk or telephone 0808 808 00 00.

 

Brain Trust UK

Offers an information and support service for patients, carers and health professionals

http://www.brainstrust.org.uk

 

Brain Tumour Charity

Offers an information and support service for patients, carers and health professionals.

https://www.thebraintumourcharity.org

 

Useful websites

www.nhs.uk

www.northamptongeneral.nhs.uk

 

Other information

Northampton General Hospital operates a smoke-free policy. This means that smoking is not allowed anywhere on the Trust site, this includes all buildings, grounds and car parks.

Leaflets, information, advice and support on giving up smoking and on nicotine replacement therapy are available from the local Stop Smoking helpline on 0845 6013116, the free national helpline on 0300 123 1044, email: smokefree@nhft.nhs.uk and pharmacies.

Car parking at Northampton General Hospital is extremely limited and it is essential to arrive early, allowing ample time for parking. You may find it more convenient to be dropped off and collected.

This information can be provided in other languages and formats upon request including Braille, audio cassette and CD. Please contact (01604) 544516 or the Patient Advice & Liaison Service (PALS) on (01604) 545784, email: pals@ngh.nhs.uk.

 

This information was taken from Northampton General Hospital leaflet PC1124 (Feb 2018).

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