End of treatment and follow-up

Once your child completes treatment, the specialist doctors involved in their care will see them for the following couple of years on a regular basis. Follow-up care ensures that any problems caused by the brain tumour or treatment can be identified early.

Generally there are two key concerns:

1. Will the tumour come back?
2. What are the consequences of the treatment on my child’s brain in the future?

These are valid concerns and it is important to acknowledge them. Talk about them with your child’s clinical team.

Your child may be referred to a late-effects team, and a specialist doctor or nurse will carry out reviews depending on your child’s needs. This may happen many years after your child has completed their treatment depending on their age.

When treatment has finished, and your child has been discharged from hospital, you may expect life to return to how it was before diagnosis. This may not be the case, because recovery takes time, and your child will require ongoing care and monitoring. Many people find that although life never returns to the ‘normal’ they knew, they start living a ‘new normal’ – a way of life that is normal to them now. For some children, the tumour is gone or stable and likely to remain. For others, it’s a process of coming to terms with a longer-term condition and a reality that it is not going away. The healthcare team will create a summary of the care your child has received and a follow-up care plan.

What to expect or ask about when treatment finishes:

• routine imaging – your child will be offered scans (such as MRI) at intervals decided by their healthcare team. This is to check for any possible recurrence or changes of the tumour.
• regular clinical reviews to assess changes in your child’s physical, psychological and cognitive well-being
• ready access to assessment and rehabilitation services for problems such as epilepsy, headaches and speech or visual problems
• ready access to specialist neuropsychology and neuropsychiatry services
• immediate access to specialist equipment that would assist rehabilitation as necessary
• clear information on who to contact and how if you are concerned about your child’s condition
• follow-up as close to home as possible.

Questions you can ask when treatment has finished:

• What follow-up care can we expect?
• When will the next scan be?
• When will my child’s port be removed?
• Who can I call if I am concerned about my child at home?
• Which doctor or nurse will we see and how often?
• Are there any post-treatment symptoms we should be aware of?
• What should we do about symptoms that worry us?
• What can be done about pain relief, fatigue or other problems after treatment?
• How long before my child can return to school?
• Is there anything we can do to support recovery?
• Is there rehabilitation available?
• Is there psychological support available for my child? Is there support available for myself?