To be told that your child may have a brain tumor is among the most difficult news a parent can be given. This page exists to put the words and the journey into plain language - what your doctors mean when they use the term, what tests will follow, what the treatment involves, and what the path through it tends to look like. The information here is general, your child's neurosurgeon and oncologist will discuss what applies to your child specifically.
A brain tumor is a growth of abnormal cells in the brain or in the structures around it. The word "tumor" is broad, it covers many different conditions and each has its own outlook. Some grow slowly and may be cured by a single operation, others behave more aggressively and need a combination of treatments. The first task of your child's team is to work out exactly which type of tumor your child has.
Paediatric brain tumors are not the same as those seen in adults. Children develop their own specific types, often in different regions of the brain, and they respond to treatment differently. This is why a child with a brain tumor is best cared for by a team that has specific experience in paediatric brain tumors.
Tumors are described as benign (slow-growing, less likely to spread) or malignant (faster-growing, often requiring more intensive treatment). An important point about the brain - even a benign tumor can cause significant problems if it presses on a critical area, and many malignant paediatric tumors today respond very well to treatment.
Names you may hear from the team include medulloblastoma, low-grade glioma (sometimes called pilocytic astrocytoma), ependymoma, craniopharyngioma, germ cell tumor, or high-grade glioma. Each is a separate diagnosis with its own treatment pathway and its own outlook. It is worth asking the team to write the exact name down for you, the precise diagnosis is what determines the plan and the prognosis, and it helps you find accurate information online.
The symptoms of a brain tumor in a child depend on the age, the location of the tumor and the speed at which it is growing. Many of the symptoms listed below are non-specific and can have entirely different causes, but anything that is persistent or worsening needs to be reviewed by a doctor.
The first and most useful test is an MRI of the brain. The MRI uses a strong magnet (with no radiation) to produce detailed images of the brain anatomy. Your child will need to be still throughout the scan, younger children often require light sedation or a brief general anaesthetic to achieve this. The MRI is typically performed without and then with intravenous contrast (gadolinium), which highlights tumor tissue and makes its borders clearer.
A CT-scan of the head is sometimes performed first, in particular in an emergency setting, because it is fast. CT uses a small dose of X-ray radiation. It is good at picking up bleeding or any sudden change, but the MRI gives a much clearer picture of the tumor itself.
The images often point towards a particular type of tumor, but they cannot be the final word. A tissue sample is required in most cases - either through a biopsy (a small piece taken with a needle) or by removing the tumor in an operation. The tissue is then examined under the microscope and sent for laboratory testing.
Modern brain tumor diagnosis is no longer based on the microscope alone. Tumors are now also tested for specific molecular markers - features of the tumor's DNA that tell us a great deal about how it will behave and which treatments are likely to be effective. The current world classification (WHO 2021) combines the microscopic findings with these molecular results. This is why the final diagnosis after surgery can take a week or more, the team is waiting for the complete picture to be assembled.
Depending on the tumor type, your child may also need an MRI of the whole spine and a sample of cerebrospinal fluid (CSF) to assess whether the tumor has spread. Certain tumors additionally require blood tests for hormones or tumor markers.
Treatment is nearly always tailored to the specific tumor type, the child's age, and the tumor location. The care of these children is delivered by a multidisciplinary team - a paediatric neurosurgeon, a paediatric oncologist, a radiation oncologist, paediatric neurology, endocrinology, neuropsychology, rehabilitation, and a nurse coordinator who keeps everything connected. Most treatment plans use a combination of the approaches outlined below.
Your child's case will be discussed at a tumor board - a regular meeting where neurosurgery, oncology, radiation oncology, radiology and pathology review the case together and agree on the management plan. Ask the team if you would like to know the recommendations that come out of that meeting.
Treatment for a brain tumor tends to be a journey rather than a single event. After the surgery, your child will spend some time in the paediatric intensive care unit (PICU) and then move to a regular ward. The hospital stay after a brain tumor operation is generally longer than for other surgeries - typically several days to a couple of weeks - while the team monitors for swelling, confirms that the fluid pathways are working, and starts the rehabilitation process.
Some children, particularly those who have had surgery in the back part of the brain (the posterior fossa), can experience temporary difficulties with speech, swallowing, or movement in the days and weeks after the operation. This is known as posterior fossa syndrome (or cerebellar mutism syndrome). It is frightening for families to see, but in most children it improves over the following weeks to months with rehabilitation. The team will let you know in advance if this is a particular risk for your child.
When chemotherapy or radiation is required after surgery, the next phase of treatment can extend over many months and will be managed largely by the paediatric oncology team. There will be regular clinic visits, blood tests, MRI scans on a defined schedule, and at times inpatient admissions for treatment or for the management of side effects. It is demanding work - for the child and for the family - and the team will help with planning around school, work, and daily life.
Once active treatment is complete, your child will continue with follow-up for many years, often into adulthood. The long-term follow-up watches the tumor itself (through MRI scans) as well as the areas that treatment can affect - growth and hormones, hearing, vision, learning, mood, and fertility. This careful long-term follow-up is one of the reasons that outcomes for paediatric brain tumors have improved substantially over recent decades.
The prognosis depends heavily on the specific tumor type. Some children are cured with the first operation and need no further treatment. Many children with malignant paediatric brain tumors today go on to live long and full lives. Some tumors remain very difficult to treat, and the team will be honest with you about what they expect. Whatever the situation, the aim is not just to treat the tumor but to support your child's development, schooling and overall quality of life. Families going through this are not alone - paediatric neurosurgery and neuro-oncology teams, family support organisations, and other families who have travelled this path are all available to you.
During and after treatment for a brain tumor, certain signs can indicate a serious problem - raised pressure within the brain, a complication of the treatment, or an infection. Do not wait, contact the neurosurgery or oncology team (or go straight to the emergency department) right away if you notice any of the following:
If your child is difficult to wake, is having a seizure, or is having difficulty breathing, this is an emergency, go to the nearest emergency department or call the emergency services straight away.