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Radiotherapy for brain tumours at Velindre Hospital

This booklet will help you understand what will happen when you come to Velindre hospital to have radiotherapy treatment.

The booklet will explain how your treatment is planned and given. It will discuss side effects you may have and will tell you how to get more information and support. 

A glossary is provided at the front of this booklet to help you understand any words that you may find unfamiliar.  

Contact telephone numbers are given at the end of the booklet.

We hope this answers your questions. Please ask us if you have other questions that we have not covered.

Please bring a list of all the medication you are taking every time you come to Velindre.

Patient information is available on Velindre website please go to: https://velindre.nhs.wales/velindrecc/ 

Smoking is not allowed within the grounds and inside Velindre Hospital. If you need help giving up please ask us

This information is evidence based and reviewed annually.

Glossary of terms

Chemotherapy - a treatment for cancer using drugs

CT scanner - a machine that uses x-rays to take detailed pictures of your brain

Linear Accelerator (LA) - a machine that uses high energy radiation to give radiotherapy treatment

MRI scanner - a machine that uses magnetism to take detailed pictures of your body

Tumour - an abnormal growth of cells that may or may not be cancerous

What is radiotherapy?

Your doctor has decided you would benefit from a course of radiotherapy to your brain.

Radiotherapy is a treatment for tumours using high energy radiation, usually x-rays. The type and amount of radiation that you receive is carefully calculated to damage the tumour cells. This stops them from dividing properly so they are destroyed. Your treatment is planned to avoid as much healthy tissue as possible. However some healthy tissue can be affected which causes side effects. Radiotherapy treatment can be given alone, after or instead of surgery. It can also be given with or after chemotherapy.

Radiotherapy team looking after you

The doctor responsible for your care is called a Clinical Oncologist. They will prescribe your radiotherapy treatment. This will be planned by a team of physicists and planning radiographers. A team of therapeutic radiographers will give you your treatment.

Velindre is a teaching hospital so your team may include a student radiographer, student nurse or a medical student. If you don't want a student present during your clinic or treatment appointment, please tell your doctor or radiographer.

We will ask your name, address and date of birth every time you come to the radiotherapy department to avoid any confusion. 

During your treatment you will be seen by the review team. The team includes specialist radiographers with extra training to advise you on how best to deal with any side effects. They can prescribe medication to help. They will provide information and advice on any practical, financial or emotional concerns you may have during your treatment. You can speak to them at any point through your treatment.

How many treatments will I need?

Radiotherapy is normally given Monday to Friday as an outpatient. The number of treatments you will need depends on many facts about you and your particular type of tumour.  Your doctor will decide how many treatments are best for you.

Having chemotherapy with radiotherapy

If you are having chemotherapy, we will explain this part of your treatment and give you written information.

Transport to and from Velindre

Hospital transport is available but most people use their own transport. If you would like to use hospital transport, please give us as much notice as possible to arrange this for you. There is a high demand for transport so you will need to be prepared to wait for some time to be picked up and taken home. Spaces are limited so please consider travelling alone. Some local charities can also arrange transport. Also, patients on particular benefits can claim travelling expenses, please ask when you come for your treatment

Planning your radiotherapy

To plan your radiotherapy treatment you will need a CT scan. It is important your head is kept perfectly still during your treatment; to do this you will need to wear a mask during your treatment. This mask will be especially made for you in the planning department at the front of Velindre.

The treatment mask is made from a plastic sheet full of holes, you will be able to breathe normally through your nose and mouth. It will cover the front of your face and head. You will wear it for your CT scan and for your radiotherapy treatment. 

To make your mask we will ask you to lie on a hard couch which has handles to hold on to and small pads that rest comfortably but firmly onto your shoulders. This will keep you in the correct treatment position. We will use a piece of warm plastic to take an impression of your head. This should not feel uncomfortable. You will feel it being stretched over your face and fitted into position. The mask will be left on for about 10 minutes to completely cool, then we will remove it. 

Radiotherapy treatment Face Mask Wearing the mask

To get a good fit of your mask please:

  • shave or closely trim your beard 
  • do not use hair spray for this appointment
  • wear loose clothing that can be removed easily.

Once your mask has been made, you will need to have a CT scan done wearing your mask.

We use a machine called a CT (computerized tomography) scanner and also MRI to help plan your treatment. These scans give your doctor detailed pictures of the area that needs treatment.  

During your CT scan you will lie in the same position as you were in the mould room with your mask on. You will not see or feel anything. The radiographers will leave the room to turn the scanner on, but they will be watching you very closely through a large window. The CT scan usually takes about 10 minutes.

If you haven’t already had a MRI scan, this will be done in our x-ray department. It may be done on a separate appointment to the CT scan. The scan takes about 30 – 45 minutes.

You may see your doctor during this appointment if you have not signed a consent form for treatment. The doctor will discuss the benefits and risks of radiotherapy. It is your decision to go ahead with treatment, so please discuss any concerns you have before signing your consent form.  

If you have already signed your consent form for treatment during your outpatient appointment you may only see the planning radiographers.

Starting your treatment

There can be a few weeks in-between your planning scan and the start of your treatment. This is due to the time needed to plan your treatment and when the next free slot on your treatment machine is.
Please let us know if there is any time that you would be unable to come for treatment. We will take this in to account when we book your treatment. Please tell us if you have any special needs that may affect your appointments, such as:

  • needing transport
  • having any other treatment (chemotherapy, for example).

We will send you a letter or call you with your first appointment. We will give you the rest of your appointments when you come for your first treatment.

If you have a problem with the appointment, please phone the radiotherapy booking clerk as soon as possible. If the answer machine comes on, please leave your name and phone number slowly and clearly. We will ring you back as soon as possible.

Your first radiotherapy treatment

If you are an outpatient, please come to the radiotherapy entrance which is around the back of the hospital. Give your name and hand your letter to the receptionist in the radiotherapy waiting room. They will tell you where to sit and wait or direct you straight to your treatment machine. 

If you are an in-patient, one of the hospital porters will normally collect you and take you to the treatment machine.  You may be treated at any time in the day, depending on when there is a free slot on the treatment machine.

If you are due to have chemotherapy with your radiotherapy, you will be asked to collect it from our pharmacy on your first treatment.

Your radiographers will chat to you before you go in for your first treatment. We will explain what will happen during your treatment and possible side effects you may experience. We will give you advice about skin care during your treatment. Please ask any questions you have about your treatment. We may need you to re-sign your consent form before you have your first treatment.

Occasionally unforeseen machine breakdowns can happen during your treatment. This may cause delays and sometimes cancellation of your appointment on that day. We will explain this to you in more detail on your first day.

There are different types of treatment machines but most people have their treatment on a Linear Accelerator (shortened to L.A.). They each have a number, for example, you may have your treatment on LA 4 or LA 5. The LA machines may look and sound different but they give the same treatment.

During your radiotherapy treatment

In the treatment room we will ask you to lie on the couch in the same position you were in for your planning scan with your mask on. The radiographers will position you carefully and move the machine. You need to lie still and breathe normally.

Your treatment will be delivered from different angles. On your first day of treatment we check your position at each of these angles before leaving the room to start your treatment.
The machine can be controlled and moved to the different treatment angles by the radiographers outside the room.  When the machine is moving, it may come close to you but it will not touch you. When the machine is switched on you won’t feel anything, but you may hear it buzzing. 

The radiographers will be watching you all the time on television monitors. If you feel uncomfortable while the machine is on please wave your hand. We can switch the machine off and restart the treatment when you are comfortable again. 

Usually on your first day of treatment and at regular points afterwards, we will take pictures or scan the area that is being treated; you may be lying on the couch for a few extra minutes whilst this is done. The images are only used to help us check you are in the correct position for your treatment.

You need to lie still on the treatment couch for about 10-15 minutes, but the treatment itself (when you hear the buzzing noise) usually only takes a few minutes. When your treatment is finished, we will remove your mask but the couch is at a high level so please stay still until the radiographers have lowered the couch. You can then get off and leave the treatment room. The treatment procedure is the same everyday.

Taking steroids during radiotherapy

You may need to take steroid tablets such as Dexamethasone. They help to reduce swelling of your brain due to surgery or your radiotherapy treatment. You should take your steroid tablets in the morning with food. This is so that they don’t upset your stomach and cause you difficulties getting to sleep at night.

It is important not to stop taking them suddenly. When the time comes to stop taking these tablets the dose will be gradually reduced. Your review radiographers will tell you when to start reducing the dose. When having radiotherapy, it is important to tell your treatment radiographers as soon as possible if the dose is reduced at any other time.

Short term side effects of radiotherapy treatment

Any side effects that you experience normally start after about 2 weeks of treatment. Side effects only affect the part of the body that we are treating.

Radiotherapy continues to work for up to 10 days after you have finished your treatment so any side effects you experience will continue for this time also. After 10 days you will begin to recover, length of recovery time is different for each person. 

Tiredness (fatigue)

Radiotherapy can make you feel more tired than usual. You should listen to your body and rest if you need to but continue your normal activities if you feel able. Gentle exercise such as walking can be helpful to cope with fatigue.

Hair loss

You will almost certainly lose your hair in the treated area of your head. This may happen during or after you have finished your treatment. Sometimes this hair loss is permanent. If it does grow back it can take about 2 to 3 months after you finish your treatment. Your new hair may look and feel different. It may grow back patchy to start with.

During your treatment you should wash your hair with a mild shampoo and brush your hair gently. 

We can arrange for you to have a wig if you would like one. We also have a leaflet that tells you more about coping with hair loss. Please ask your radiographers for more information. 

Skin reactions

Your skin within the treatment area may turn pink, feel warm and tender; also can be dry and itchy. We will encourage you to continue your normal skin care routine during treatment; we will discuss skincare with you on your first treatment.

Headaches

Sometimes the treatment may give you headaches and make you feel sick. If this happens we may give you tablets, including steroids, to help reduce these side effects.

Nausea and sickness 

Sometimes the treatment may make you feel sick or be sick please inform us as soon as this happens; there is medication we can give you to help.

Long term side effects 

Treatment for a brain tumour can have long term effects.  These only affect a small number. For most people, the benefits of treatment far outweigh the risks.

Late side effects are rare because we can plan radiotherapy treatment very precisely. Only the area of the tumour receives high doses of treatment. Please discuss any concerns you have with your doctor. Unfortunately we cannot tell beforehand who will have long term effects and who won't nor can we predict the extent or impact of late side effects.

Late side effects can develop a few months to several years after your treatment. Unfortunately late side effects are usually permanent. They may also slowly get worse.

The treatment can cause small blood vessels in the brain to become scarred and blocked. This reduces the blood supply to small areas of the brain so some brain cells can die off. It is difficult to say how severe these symptoms may be for you. You may notice:

  • Problems thinking clearly or managing tasks you previously found easy
  • Poor memory
  • Confusion
  • Personality changes
  • Symptoms you had from your original tumour
  • Hearing loss
  • Hormone dysfunction
  • Cataracts

Finishing your treatment

At the end of your treatment we will arrange a date and time when we can phone you at home to see how you are. We can discuss side effects and offer support and advice if required.

We will also give you an outpatient follow up appointment with your doctor a few weeks after your treatment has finished to check how you are feeling. The appointment form will have the telephone number of your review team to contact if you have any concerns.

Contact phone numbers

Velindre Hospital 029 2061 5888

Radiotherapy booking clerks 029 2019 6836

Information, support & review team 029 2061 5888 ext 6421

Radiotherapy Planning Dept 029 2061 5888 ext 6150

Transport from Aberdare - Rowan Tree 01443 479369

Transport from Bridgend – Sandville 01656 743344     

Transport from Merthyr – Cancer Aid 01685 379633

Websites and Helplines

Tenovus freephone helpline            0808 808 1010

Macmillan Cancer Support              0808 808 0000
www.macmillan.org.uk 

Brain Tumour Action                  0131 466 3116
www.braintumouraction.org.uk

The Brain Tumour Charity
www.thebraintumourcharity.org       0808 800 0004

F.PI 19                    Issue 9            June 2019