Living with & beyond your diagnosis and treatment

Symptoms to look out for include renewed symptoms which might include headaches, limb weakness, altered speech or communication difficulties, cognitive changes, dizziness, nausea, seizures, memory problems, changes in vision and fatigue.

The Neuro-Oncology team aims to help and support all patients through and beyond treatment and to help manage any symptoms that cause problems.

The Neuro-oncology nurse specialist team is the best way to seek advice and can be contacted on 0113 206 8568

Lifestyle tips

• make small adjustments to your everyday activities to make things easier where you can
• take light, regular exercise to keep your energy levels up and help your breathing
• give priority to the most important things you want to do first
• consider physiotherapy to help you learn and practise helpful mobility exercises
• pace yourself so you get enough rest
• consider learning a relaxation technique, such as meditation, to help you manage your anxieties and help keep you in a positive frame of mind
• develop a support network of friends and fellow patients with whom you can share and discuss your experiences. This can help put your concerns in perspective and offer you reassurance in difficult times

Steroid management

Steroids are commonly used to help with symptoms caused by the tumour or treatment and it is very important to follow the advice given by the treating team.

Steroids can help reduce swelling around the tumour and can help to control symptoms that may be caused by the tumour such as headaches, limb weakness, dizziness, nausea and speech. They do not treat the tumour itself.

Steroids can help you feel better but can cause side effects, such as indigestion, increased appetite, difficulty sleeping or increased level of sugar in your blood so the team will aim to keep the dose as low as possible to manage your current symptoms.

It is also very important to take steroids exactly as prescribed by the specialist. Never stop taking them suddenly as this can be serious and cause side effects.

Seizure Management

Seizures are commonly seen in brain tumours. They can often present as the first clinical sign or may occur after a surgical procedure on your brain. If required, your consultant will prescribe you medication to manage these. For further information on treatment and management of seizures in brain tumours please view The Brain Tumour Charity website for a fact sheet.

Driving

You might not be able to drive for some time if you have a brain tumour. This depends on the type of tumour you have, where it is in the brain and whether you have any side effects such as seizures. It also depends on the treatment you have and what vehicle you drive. If you are suspected of having a brain tumour you must not drive. It is your responsibility to inform the DVLA, once you have your diagnosis they can advise you further. For further information on driving with a brain tumour view Check if a health condition affects your driving: Overview – GOV.UK