• Reference Number: HEY-217/2020
• Departments: Neurology and Neurosurgery, Oncology (Cancer Services)
• Last Updated: 10 July 2020

Introduction

This leaflet informs you about what happens after you have finished your course of radiotherapy and / or chemotherapy to the brain. It explains some of the side effects you may experience and outlines the support and advice that is available to you following your treatment. It is not meant to replace the discussion between you and the healthcare team. If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team.

The end of your initial cancer treatment is a milestone in your care and sometimes people find it difficult to adjust. After you have been visiting the hospital on a regular basis you may find that you suddenly feel quite anxious not to have regular contact with the healthcare team that has been caring for you.

You may also have concerns about follow-up care and what will happen next. This leaflet explains some of the basic principles. Please discuss any questions you have with your doctor or specialist nurse.

Course of radiotherapy and its side effects

The course of radiotherapy usually lasts between three and six weeks. Treatment is given daily except at weekends. Radiotherapy side effects start appearing from the second week of the treatment and increase in intensity during the remaining course. If you have symptoms which were not explained and are causing any problems, please speak to the radiotherapy nurses or the neuro-oncology clinical nurse specialists. They will advise you and may ask a doctor to see you. This may be one of the oncology registrars or your Consultant Oncologist.

Tiredness

This can sometimes last up to 6-8 weeks, but listen to your body. Gradually increase your activity as you feel able and rest when you need to.

Skin care

Continue to use Aqueous cream as advised by the nurse. If your skin breaks you need to contact the nurses on telephone number (01482) 461134, as we may need to change your skin treatment from a cream to a gel or occasionally a dressing.

Sun sensitivity

Whilst undergoing treatment avoid the sun in the affected area altogether. After radiotherapy the skin in the treated area will be thinner and more sensitive to the sun. It is advisable to always wear a high factor waterproof sun cream when in the sun or cover up.

Neurological symptoms

These should gradually begin to subside and may include headaches, especially in a morning, accompanied by nausea, and other “focal” symptoms you have had previously. These may include visual disturbances, speech problems, loss of limb power or sensation.

If you have any problems or concerns, you should contact the radiotherapy nurses on telephone number (01482) 461134, or neuro-oncology clinical nurse specialists, on telephone number (01482) 607831.

Hair loss

This will have started during treatment and only within the specific treatment field. Your hair may gradually start to return, but may not grow back completely. Advice regarding hair care will have been given to you when treatment started.

An appointment will be made for you to attend the Oncology Clinic for follow up approximately 4 to 6 weeks after the completion of radiotherapy, unless otherwise stated. If you have any concerns during this time, you may contact the radiotherapy nurses for advice on telephone number (01482) 461134, the neuro-oncology nurse specialists on telephone number (01482) 607831, or out of hours ring telephone number (01482) 875875 and ask for bleep 500.

Side-effects of chemotherapy

Low blood count

During chemotherapy the oncologist will have been carrying out regular checks on your blood count. Your blood count should start to improve again once chemotherapy has finished. It is unlikely that you will need to have any further blood tests immediately unless there has been a problem during treatment.

Nausea and vomiting

Nausea and vomiting. As soon as you have stopped taking the tablets this should also start to subside. The doctor will advise you that you should be able to stop taking any anti-sickness medication you have been given.

Loss or altered taste

This may be a lasting problem but make sure you are not developing thrush, which is common if you are on steroids (such as Dexamethasone).

What about follow-up care?

After your initial treatment, you will continue to receive long term follow-up with the neuro-oncology team. This is likely to involve having another scan at some point and seeing the team in the Neuro-oncology Clinic. Your individual management plan will be discussed with you by the doctors and nurses caring for you. There are also other services at the oncology centre that you can access for support, including the oncology health centre and the living with and beyond cancer team.

What happens at the neuro-oncology clinic?

Some patients are reviewed in the combined Neuro-oncology Clinic, while some patients are followed up either by oncologists (at Castle Hill Hospital) or neurosurgeons (at Hull Royal Infirmary) separately. At the combined clinic which happens at Hull Royal Infirmary you will be reviewed by the Neurosurgeon, Oncologist and Clinical Nurse Specialist together. This means that they will assess your health in relation to your brain tumour treatment and review your medication.

It is helpful if you can bring a list of your medication with you to the appointment.

The team will also plan with you how your condition will be monitored over the coming months. This is likely to be in the form of repeat outpatient appointments to monitor the progress of your condition and possibly further MRI or CT scans of your brain depending on the type of your tumour and your clinical condition. It is unlikely that you will be having a further scan immediately after radiotherapy, as changes in the brain due to the treatment can make the scan difficult to interpret. It is much more common for a scan to be arranged for 3-4 months after treatment. This scan is then used as a baseline to compare with further scans that may be done in the future if you experience further problems or symptoms.

It is common after you have finished radiotherapy treatment to have your steroid medication reduced over a period of weeks. If you are still on steroids (Dexamethasone) when you attend the clinic you may be given instructions on how to safely reduce your steroids.

The Clinical Nurse Specialist can provide support to you between Neuro-oncology Clinic appointments, either by telephone or by seeing you at the hospital. This can include monitoring your steroid medication for you.  The Clinical Nurse Specialist will also provide advice on symptom management for you and liaise with your neurosurgeon, doctor or other specialist regarding your medication. The Clinical Nurse Specialist also has access to the neurosurgeons and oncologists and can alter your follow-up appointments if necessary to meet your individual needs. The Clinical Nurse Specialist can also refer you to other specialist services in the community as needed, such as the Occupational Therapy service, Community Macmillan team, or District Nurse.

After the initial post treatment scan you may have further follow up scans at regular intervals. The interval between the scans depends on the condition of your disease and would be decided by the oncologist or neurosurgeon. These scans will be discussed in the Neuro-oncology Multi-disciplinary team (MDT) meeting. If the scans are unchanged and you are clinically stable you may be informed about the scan results either by letter or by telephone if you are in agreement with this.

Driving

If you are having treatment for a brain tumour, you must not drive. You must inform the DVLA of your medical condition:

By Post	By Telephone
Drivers Medical Group, DVLA, Swansea, SA99 1TU.	0300 790 6806.

For more information about driving and brain tumours, please contact the neuro-oncology clinical nurse specialists (01482) 607831.

Further information

Further information on all aspects of brain tumour and its treatment can be obtained from the following sources:

Brain And Spine Foundation

Helpline Telephone: 0808 808 1000.
Website: www.brainandspine.org.uk.

The Brain Tumour Charity

Telephone: 0808 800 0004.
Website: www.thebraintumourcharity.org.

Brain Tumour Action

Telephone: 0131 466 3116.
Website: braintumouraction.org.uk.

Macmillan Cancer Support

Telephone: 0808 808 00 00.
Website: www.macmillan.org.uk.

Astro Brain Tumour Fund

Telephone: (01485) 572767.
Website: www.astrofund.org.uk.

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the neuro-oncology nurse specialists (01482) 607831.

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

• you must be able to give your consent
• you must be given enough information to enable you to make a decision
• you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.