What are brain tumors in children?

A brain tumor is an abnormal growth of tissue in the brain. The brain is part of the central nervous system (CNS). The CNS also includes the spinal cord. The main parts of the brain are:

• Cerebrum. This is the front of the brain. The cerebrum has two halves, the right and left hemispheres. It controls thoughts, emotions, speech, and movement. It also helps with understanding information from the senses. This includes seeing, hearing, smelling, touching, and feeling pain.

• Cerebellum. This is the back of the brain. It organizes muscle movement and helps to maintain posture, balance, and equilibrium.

• Brainstem. This is the base of the brain. It includes the midbrain, the pons, and the medulla. It's the part of the brain that connects to the spinal cord. It plays a part in controlling muscles and sensations from the body. Part of the brainstem helps control breathing and the heartbeat. Many of the cranial nerves start in the brainstem. The cranial nerves carry messages between different parts of the upper body to the brain. These parts include the muscles in the face, mouth, and around the eyes.

Brain tumors start in the cells of the brain. They can be either of the following:                   

• Benign. This kind of tumor is not cancer. In most cases, once a benign tumor is removed, it doesn’t grow back. Most benign brain tumors don’t grow into nearby tissue. These tumors can cause symptoms depending on how big they are and where they are in the brain.

• Malignant. This kind of tumor is cancer. These brain tumors tend to grow fast, and grow into nearby tissue. Malignant brain tumors can spread to other parts of the brain or to the spinal cord but don’t usually spread to other parts of the body. They may grow back after treatment. 

Brain tumors can happen at any age. Brain tumors in infants and children are very different from adult brain tumors.

What causes a brain tumor in a child?

Healthcare providers don’t know why certain children develop a brain tumor. Rarely, brain tumors are the result of exposure to radiation or linked to a familial cancer syndrome.  

Which children are at risk for a brain tumor?

Children with certain genetic conditions have an increased risk for tumors of the central nervous system. This includes children with:

• Neurofibromatosis type 1 (von Recklinghausen disease) and type 2

• Von Hippel-Lindau disease

• Li-Fraumeni syndrome

• Hereditary retinoblastoma

• Tuberous sclerosis

• Gorlin syndrome

• Cowden syndrome

• Turcot syndrome

• Rubinstein-Taybi syndrome

Children who have had radiation therapy for other cancers of the head are also at an increased risk for a new brain tumor.

What are the symptoms of a brain tumor in a child?

Symptoms vary depending on how big the tumor is, how fast it's growing, and where it is in the brain.

Growing tumors may cause increased pressure on the brain in the limited space inside the skull. This is called increased intracranial pressure (ICP). But this isn’t usually the case in babies because their skull bones haven’t fully grown together.

Pressure on the brain may cause symptoms like:

• Headache

• Enlarged head in infants

• Nausea and vomiting

• Personality changes

• Irritability

• Sleepiness

• Seizures

• Vision, hearing, and speech problems

Symptoms of brain tumors in the cerebrum can include:

• Seizures

• Changes in vision or hearing

• Trouble talking or understanding

• Weakness or paralysis in part of the body (often just one side)

• Mood changes, such as feeling depressed

Symptoms of brain tumors in the cerebellum can include:

• Trouble swallowing

• Trouble with eye movement

• Changes in speech

• Clumsy movements of the hands, arms, feet, or legs

• Problems walking (ataxia)

Symptoms of brain tumors in the brainstem can include:

• Weakness

• Balance problems

• Trouble walking (ataxia)

• Muscle stiffness

• Trouble with eye or other facial movement

• Trouble swallowing

• Double vision

• Hearing loss

• Bowel or bladder problems

The symptoms of a brain tumor can be like many other health conditions. Make sure your child sees a healthcare provider for a diagnosis.

How is a brain tumor diagnosed in a child?

Your child's healthcare provider will ask about your child's health history and symptoms. An exam will be done. It will include a neurological exam. This tests reflexes, muscle strength, eye and mouth movement, and coordination. Your child's healthcare provider may refer your child to a healthcare provider specializing in the nervous system (neurologist or neurosurgeon) or to a cancer specialist (oncologist). Your child may need tests such as:

• MRI. An MRI uses magnets, radio waves, and a computer to make detailed pictures of the inside of the body. Contrast dye may be put into your child's blood through a vein. It helps to show the tumor more clearly.

• CT scan. A CT scan uses a series of X-rays and a computer to make detailed pictures of the inside of the body. It might be used if an MRI can't be done or in some emergencies.

• Lumbar puncture. A special needle is put into the lower back, into the spinal canal. This is the area around the spinal cord. A small amount of cerebrospinal fluid (CSF) is removed and sent for testing. CSF is the fluid around the brain and spinal cord. This test is done to check the spinal fluid for cancer cells.

• Positron emission tomography (PET) scan. For this test, a radioactive sugar is put into the bloodstream. Cancer cells use more sugar than normal cells, so the sugar will collect in cancer cells. A special camera is then used to see where the radioactive sugar collects in the body. A PET scan can sometimes find cancer cells in other parts of the body, even when they don’t show up on other tests. This test is often used in combination with a CT scan. This is called a PET/CT scan.

• Biopsy. Tumor cells are removed and sent to a lab for testing. A biopsy is done to find out the type of tumor and how quickly it's likely to grow.

• Blood tests. Blood tests may be done to check for substances that are released by some tumors. These are called tumor markers.

These tests will show where the tumor is, how big it is, and if it's cancer (malignant) or not cancer (benign). If your child has cancer, these tests provide important information when deciding how to best treat the cancer and what outcomes to expect. Some types of cancer use standard staging systems of numbers and letters to note this information and whether the cancer has spread. Brain tumors are not staged this way because they usually don't spread. Instead, when planning treatment and predicting outcomes, your child's healthcare providers will look at things like:

• The exact type of tumor

• The location and size of the tumor

• Whether the cancer has spread to the CSF, spinal cord, more than one part of the brain, or beyond the brain

• How the tumor is affecting your child

• Your child's age

• Whether the tumor can be removed with surgery

The healthcare provider will also consider the grade of the cancer cells. This is a measure of how quickly the cells are likely to grow and spread. It's based on how much the cancer cells look like normal cells. High-grade cancer cells look very different from normal cells and are more likely to grow and spread quickly.

Your child's healthcare provider will talk to you about these things and recommend treatment for your child. These can be long and complex discussions. Be sure to ask questions and have the healthcare provider explain things to you in a way you understand so you can make the best decisions for your child.

How is a brain tumor treated in a child?

Since brain tumors in children are rare, it's important to find a healthcare team that has experience and skill in treating children with brain tumors.

Treatment may include 1 or more of the below:

• Surgery. Surgery is usually the first step in treating brain tumors. The goal is to remove as much of the tumor as possible, while keeping brain function. The surgery is also done to take a sample of the tumor to determine what kind it is.

• Chemotherapy. These are strong medicines that kill cancer cells or stop them from growing. They may be given into the vein (IV), injected into tissue, or taken by mouth.

• Targeted therapy. These are medicines that focus on specific parts of cancer cells.

• Radiation therapy. These are high-energy X-rays or other types of radiation. They're used to kill cancer cells or stop them from growing. Stereotactic surgery is a special type of radiation therapy. It uses very focused beams of energy that can destroy tumors with less damage to normal, surrounding tissue.

Other treatments may include:

• Corticosteroids. These treat and prevent swelling in the brain.

• Antiseizure medicine. These treat and prevent seizures.

• Ventriculoperitoneal (VP) shunt. A long tube called a shunt may be put inside the brain to remove extra fluid. This helps control intracranial pressure.

• Antibiotics. These treat and prevent infections.

• Hormones. Medicines can be used to replace hormones if a tumor affects natural hormone production.

Sometimes these treatments are called supportive or palliative care. They're used to treat side effects and problems caused by the tumor, but not the tumor itself. Medicines and other treatments can be used for pain, fever, infection, nausea, and vomiting.

With any tumor, how well a child is expected to recover (prognosis) varies. Keep in mind:

• Getting medical treatment right away is important for the best outcomes. 

• Ongoing follow-up care during and after treatment is needed.

• New treatments are being tested to improve outcomes and to lessen side effects.

What are possible complications of a brain tumor in a child?

A child may have complications from the tumor or from treatment, such as:

• Damage to the brain or nervous system that causes problems with coordination, muscle strength, speech, or eyesight

• Problems after surgery, like infection, bleeding, and problems with general anesthesia (the medicines used to make your child sleep during surgery)

• Infection and bleeding

• Delayed growth and development

• Learning problems

• Problems with reproduction (infertility)

• Return of the cancer

• Growth of other cancers in the future

How can I help my child live with a brain tumor?

A child with a brain tumor needs ongoing care. Your child will be seen by oncologists and other healthcare providers to treat any late effects of treatment and to watch for signs or symptoms of the tumor returning. Your child will be checked with imaging tests and other tests. And your child may see other healthcare providers for problems from the tumor or from treatment. For instance, your child may see an eye care provider (ophthalmologist) for vision problems.      

Your child may need therapy to help with movement and muscle strength. This may be done by physical and occupational therapists. If your child's speech is affected, they may need help from a speech therapist. Your child may also need the help of other therapists for learning or emotional problems.

You can help your child manage their treatment in many ways. For instance:

• Your child may have trouble eating. A dietitian may be able to help.

• Your child may be very tired. They will need to balance rest and activity. Encourage your child to get some exercise. This is good for overall health. And it may help to lessen tiredness.

• Get emotional support for your child. A counselor, psychologist, or child support group can help.

• Make sure your child attends all follow-up appointments.

When should I call my child’s healthcare provider?

Call the healthcare provider if your child has:

• Symptoms that get worse or don't get better with treatment

• New symptoms

• Side effects from treatment

• Signs of infection, like fever or chills

• Trouble breathing

• Headaches

• Confusion

Key points about a brain tumor in a child

• Brain tumors start in the cells of the brain.

• Brain tumors can grow at any age. Those that grow in infants and children are very different from those in adults.

• The types of brain tumors are based on the cell type and its location in the brain.

• Some common symptoms of brain tumors are headache, nausea and vomiting, and trouble with movement.

• Most children are treated with surgery, chemotherapy, and radiation therapy.

• Ongoing follow-up care is important to watch for effects of tumors or treatment and the cancer growing back.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

• Know the reason for the visit and what you want to happen.

• Before your visit, write down questions you want answered.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.

• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.

• Ask if your child’s condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if your child does not take the medicine or have the test or procedure.

• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.