After treatment

Life after brain tumour treatment and navigating the path forward

Continued care and follow-up appointments to monitor your progress

Possible long-term side effects

The medical team will discuss with the patient the possible short and long-term side effects of each treatment, and help with ways to manage them. If you are concerned about any of these or feel like they need managing differently, contact your medical team.

Side effects can include

Seizures

Seizures result from changes to electrical activity within the brain, which result in changes to muscle tone, movement, behaviour or sensation. They are common in brain tumours due to alterations in electrical activity in and around the tumour.

Seizures may affect the whole body and cause people to fall down and lose consciousness for a short while. They may also cause symptoms such as twitching of the arms and legs. People may also become unresponsive to those around them, or they may experience changes to sensation, such as unusual smells.

A seizure may be one of the presenting symptoms of your brain tumour, but some patients suffer ongoing seizures, due to their tumour. Seizures are usually treated with anti-seizure medication.

Fatigue

Fatigue is the constant feeling of being tired, weak and worn out. It is one of the most common side effects of brain tumours and their treatments, for both low-grade and high-grade tumours. Fatigue can affect everyone differently, and some may not experience it at all. It may fluctuate throughout the day, or feel different from one day to the next. People with brain tumours often experience fatigue as their body’s energy levels are being used to fight off the tumour or to recover from treatment.

Symptoms

• lack of energy
• aching muscles
• feeling worn out after light physical activity
• irritability
• anxiety and depression
• difficulty in concentration or decision-making
• over-sleeping
• struggling to sleep

Though fatigue has no cure, it is important to talk to the healthcare team if you are struggling with fatigue that is having a negative impact on life.

Low mood, depression and anxiety

Mental health can often be affected by a brain tumour diagnosis and its treatment, for both the patient and family members. It is common to feel low mood and worry when facing treatment. However, it is important to notice when a low mood is turning into depression and to reach out for help. Depression and anxiety are not a sign of weakness, and can often be a direct result of a major life event like a brain tumour diagnosis.

Low mood may mean feeling down and finding it harder to do daily activities, or finding less joy in doing them. It can be helpful to make small changes, like getting out in nature or doing things that you enjoy. Talking to someone can also be beneficial.

If a low mood does not lift, this may be a sign of depression. It manifests in a range of ways including continuous low mood, feeling tearful and irritable, lack of interest or motivation, neglecting hobbies, isolation from others and suicidal thoughts.

Anxiety is a feeling of unease, worry or fear that is more constant, hard to control and affects daily life. Living with a brain tumour and going through treatments, can create anxiety

Depression and anxiety may affect both the patient and family or carers. If you think that you may have depression or anxiety, contact your medical team.