EASY READING

If Your Child Has a Brain or Spinal Cord Tumor

What are brain and spinal cord tumors in children?

Brain and spinal cord tumors are masses of changed cells in the brain or spinal cord that have grown out of control. They may or may not be cancer. If the tumor is not cancer it may be called benign (be-NINE).

Tumors in the brain or spinal cord can press on or spread into normal tissue as it grows. This makes it hard for the brain and spinal cord to work the way they should to control the rest of the body.

The main concerns with brain and spinal cord tumors are how fast they will grow and whether they can be taken out and not come back. These tumors rarely spread to other parts of the body.

illustration showing the location of the cranial nerves, spinal nerves, peripheral nerves and central nervous system (brain, cerebellum, spinal cord)

The brain and spinal cord

The brain and spinal cord are called the central nervous system or CNS. They serve as the main “processing center” for all of the nervous system.

The brain and spinal cord are surrounded and protected by a special liquid, called CSF or cerebrospinal fluid (suh-REE-bro-SPY-nuhl FLEW-id). The brain is also protected by the skull. The spinal cord is protected by the stack of spinal bones called vertebrae (VER-tuh-bray).

Different parts of the brain control different things, like the way we see, move, or think. The spinal cord connects to nerves all over the body to carry messages back and forth between the brain and the body.

Are there different kinds of brain and spinal cord tumors in children?

There are many kinds of brain and spinal cord tumors. Your doctor can tell you more about the kind your child has. Here are some of the more common types and how to say them:

  • Astrocytoma (AS-troh-sy-TOE-muh)
  • Glioblastoma (GLEE-o-blast-O-muh)
  • Brain stem glioma (glee-O-muh)
  • Ependymoma (ih-PEN-dih-MO-muh)
  • Oligodendroglioma (AHL-ih-go-DEN-dro-glee-O-muh)
  • Medulloblastoma (MED-yew-lo-blas-TOE-muh)
  • Pineoblastoma (PIN-ee-o-blast-O-muh)
  • Craniopharyngioma (CRAY-nee-0-fuh-RIN-jee-O-muh)
  • Pleomorphic xanthoastrocytoma (PLEE-o-MORF-ik ZAN-tho-AS-troh-sy-TOE-muh) or PXA
  • Dysembryoplastic neuroepithelial tumors (dis-EM-bree-o-PLAS-tik NUR-o-EP-ih-THEE-lee-uhl) or DNETs
  • Ganglioglioma (GANG-lee-o-glee-O-muh)
  • Choroid plexus tumor (KOR-oyd PLEKS-us TOO-mer)
  • Schwannoma (shwah-NO-muh), also called neurilemmoma (NOR-uh-leh-MO-muh)

Questions to ask the doctor

  • Why do you think my child has a brain or spinal cord tumor?
  • Is there a chance he/she doesn’t have one?
  • Would you please write down the kind of tumor you think he/she might have?
  • What will happen next?

How does the doctor know my child has a brain or spinal cord tumor?

Some symptoms of brain and spinal cord tumors may start slowly and get worse over time. Sometimes they happen very fast. Common symptoms are headaches and seizures. Other are blurry vision, sick stomach, and changes in the way your child feels or acts. The problems depend on where the tumor is. The doctor will ask you questions about your child’s health and do a physical exam.

The doctor may send your child to a pediatric neurologist (pee-dee-AT-trick nur-AHL-uh-jist) or a pediatric neurosurgeon (pee-dee-AT-trick NUR-o-SUR-jun). These are doctors who treat problems in a child’s nervous system.

Tests that may be done

If signs are pointing to a brain or spinal cord tumor, tests will be done. Here are some of the tests your child may need:

MRI scan: This test uses radio waves and strong magnets to make detailed pictures of the inside of the body. MRI is the best way to look for tumors in the brain and spinal cord. Different kinds of MRIs may be used to look at blood vessels, blood flow, and activity in the brain.

CT or CAT scan: This test uses x-rays to make detailed pictures of the inside of the body. It can be helpful for looking at the bones around the tumor.

MR or CT angiography (AN-jee-AH-gruh-fee): These tests use special types of MRI or CT scans to look at the blood vessels inside the brain and around a tumor.

PET scan: For a PET scan, a kind of sugar is put in your child’s blood. The sugar can be seen inside your child’s body with a special camera. If there is a tumor, this sugar shows up as a “hot spot” where the tumor is found.

Biopsy: In a biopsy (BY-op-see), the doctor takes out a small piece of tissue to check it for cancer cells. A biopsy is often the only way to tell exactly what kind of tumor it is.

Questions to ask the doctor

  • What tests will my child need to have?
  • Who will do these tests?
  • Where will they be done?
  • Who can explain them to me?
  • How and when will we get the results?
  • Who will explain the results to us?
  • What do we need to do next?

How serious is my child’s cancer?

For many types of cancer, the stage (extent) of the cancer is to decide what type of treatment is best and how likely it is that a person will get better. But brain and spinal cord tumors are not staged like most cancers.

Some of the things that doctors use to decide on treatment and a child’s chances of getting better are:

  • The child’s age
  • Whether the tumor is affecting normal brain functions
  • The type of tumor
  • The grade of the tumor (how quickly it’s likely to grow, based on how the cells look)
  • The size of the tumor
  • Where the tumor is
  • How much of the tumor can be taken out with surgery (if it can be done)
  • Whether or not the tumor has spread to other parts of the brain or spinal cord

Questions to ask the doctor

  • Where is the tumor?
  • What type of tumor is it?
  • How fast is the tumor likely to grow?
  • How big is the tumor?
  • Can the tumor be removed?
  • Has the tumor spread to other parts of my child’s brain and spinal cord?
  • What are the chances of curing the tumor?
  • What will happen next?

What kind of treatment will my child need?

Treatment for brain and spinal cord tumors depends on things like the type of tumor and where it is.

Surgery

Surgery (SUR-jur-ee) is the first treatment for most kids. Surgery may be used to:

  • Get a biopsy sample
  • Take out the tumor
  • Make the tumor smaller so it can be better treated with radiation (RAY-dee-AY-shun) or chemo (KEY-mo)
  • Help prevent or treat problems from the tumor (like putting in a tube to drain fluid from around the brain)

There are many kinds of surgery. The type used depends on where the tumor is and how big it is. Radiation may be used with surgery to cure the tumor or help keep it from growing.

Ask your doctor what type of surgery your child will need. Every type has pros and cons.

Side effects of surgery

Any type of surgery can have risks and side effects. Ask the doctor what you can expect. If your child has problems, let the doctors know. Doctors who treat children with brain and spinal cord tumors should be able to help with any problems that come up.

Radiation treatments

Radiation uses high-energy rays (like x-rays) to kill cancer cells. It may be used:

  • After surgery to kill any tumor cells left behind
  • As the main treatment if surgery can’t be done
  • To help ease or prevent problems from the tumor

Radiation is not often used in children younger than 3 years because it might cause long-term problems with the way the brain grows.

There are different ways to give radiation treatments.

Radiation can be aimed at the tumor from a machine outside the body. This is called external beam radiation. The radiation may be given all at once or in smaller doses given over a few days or weeks.

Radiation can also be given by putting tiny seeds of radiation into or near the tumor. This is called brachytherapy (BRAKE-ee-THAIR-uh-pee). This kind of radiation is most often given along with external beam radiation.

Side effects of radiation treatments

If the doctor suggests radiation treatment, talk about what side effects might happen. Radiation might cause children to feel tired, or feel sick and throw up. If large parts of the brain are treated, radiation can change how the brain works.

Most side effects get better after treatment ends. Some might last longer. Talk to your child’s cancer care team about what to expect during and after treatment. They should be able to help with any problems that come up.

Chemo

Chemo (KEY-mo) is the short word for chemotherapy (KEY-mo-THAIR-uh-pee), the use of drugs to fight cancer. The drugs are often given through a needle into a vein or taken as a pill. These drugs go into the blood and spread through the body.

Chemo can also be put right into the CSF or right into the brain during surgery. Ask the doctor how your child will get chemo.

Chemo is often given in cycles or rounds. Each round of treatment is followed by a break. Sometimes more than one chemo drug might be given. Treatment often lasts for many months.

Side effects of chemo

Chemo can make your child feel very tired, sick to the stomach, and cause their hair to fall out. But these problems go away after treatment ends.

There are ways to treat most chemo side effects. If your child has side effects, talk to the cancer care team so they can help.

Targeted drugs

Targeted drugs are made to work mostly on the changes in cells that make them cancer. These drugs affect mainly cancer cells and not normal cells in the body. They may help treat certain types of brain and spinal cord tumors even if other treatments don’t work.

Side effects of targeted drugs

Side effects depend on which drug is used. These drugs might make a child feel sick to the stomach and cause chills, fever, rashes, and headaches. Side effects go away after treatment ends.

There are ways to treat most of the side effects caused by targeted drugs. If your child has side effects, talk to the cancer care team so they can help.

Clinical trials

Clinical trials are research studies that test new drugs or other treatments in people. They compare standard treatments with others that may be better.

If you would like your child to be in a clinical trial, start by asking the doctor if your clinic or hospital takes part in clinical trials. You can also call our clinical trials matching service at 1-800-303-5691 or go online at www.cancer.org/clinicaltrials to find studies near you.

Clinical trials are one way to get the newest treatments. They are the best way for doctors to find better ways to treat tumors. If your doctor can find one that’s studying the kind of tumor your child has, it’s up to you whether to take part. And if you do sign your child up for a clinical trial, you can always stop at any time.

What about other treatments that I hear about?

When your child has a tumor you might hear about other ways to treat it or treat your child’s symptoms. These may not always be standard medical treatments. These treatments may be vitamins, herbs, diets, and other things. You may wonder about these treatments.

Some of these are known to help, but many have not been tested. Some have been shown not to help. A few have even been found to be harmful. Talk to your child’s doctor about anything you’re thinking about using, whether it’s a vitamin, a diet, or anything else.

Questions to ask the doctor

  • What treatment do you think is best for my child?
  • What’s the goal of this treatment? Do you think it could cure the tumor?
  • Will treatment include surgery? If so, who will do the surgery?
  • What will the surgery be like?
  • Will my child need other types of treatment, too?
  • What will these treatments be like?
  • What’s the goal of these treatments?
  • What side effects could my child have from these treatments?
  • What can we do about side effects that my child might have?
  • Is there a clinical trial that might be right for my child?
  • What about vitamins or diets that friends tell me about? How will we know if they are safe?
  • How soon does my child need to start treatment?
  • What should we do to be ready for treatment?
  • Is there anything we can do to help the treatment work better?
  • What’s the next step?

What will happen after treatment?

You’ll be glad when treatment is over. But it’s hard not to worry about the tumor coming back. Even if it never comes back, you might still worry about it. For years after treatment ends, your child will see their doctor. At first, visits may be every few months. Then, the longer your child is tumor-free, the less often the visits are needed.

Be sure to take your child to all of these follow-up visits. The doctors will ask about symptoms, do physical exams, and may do tests to see if the tumor has come back. They will also test your child to see if treatment has damaged his or her brain. If needed, they will help you and your child learn to deal with the changes.

Having a tumor and dealing with treatment can be hard, but it can also be a time to look at life in new ways. You might be thinking about how to improve your child’s health. Call us at 1-800-227-2345 or talk to your child’s doctor to find out what you can do to help your child feel better.

You can’t change the fact that your child has had a tumor. What you can change is how your child lives the rest of their life – making healthy choices and feeling as good as they can.

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master’s-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Biopsy (BY-op-see): Taking out a small piece of tissue to see if there are cancer cells in it.

Central nervous system: The brain and the spinal cord, which serve as the main “processing center” for all of the nervous system. Often called the CNS.

Cerebrospinal fluid (suh-REE-bro-SPY-nuhl FLEW-id): The clear liquid that surrounds and cushions the brain and spinal cord. Often called CSF.

Metastasis (muh-TAS-tuh-sis): Cancer cells that have spread from where they started to other places in the body.

Neurologist (nur-AHL-uh-jist): A doctor who specializes in treating nervous system problems or diseases.

Neurosurgeon (NUR-o-SUR-jun): A doctor who specializes in using surgery to treat nervous system problems or diseases.

Neuroradiologist (NUR-o-ray-dee-AHL-uh-jist: A doctor who specializes in using imaging tests to look at the nervous system.

Ommaya reservoir (o-MY-uh REZ-er-vwahr): A plastic, dome-shaped drum that’s put just under the scalp during surgery. A tube attached to it goes into the brain where it reaches the CSF. Doctors and nurses can use a thin needle to give chemo through the drum or to take out CSF for testing.

VP shunt: Also called a ventriculoperitoneal (ven-TRIK-yew-lo-pair-ih-tuh-NEE-ahl) shunt. A thin tube used to drain extra CSF to ease pressure in the brain. Surgery is done to put one end of the shunt in the brain and the other end in the abdomen (belly). The tube runs under the skin of the neck and chest. The flow of CSF is controlled by a valve in the tubing. Shunts may be short-term or permanent.

We have a lot more information for you. You can find it online at www.cancer.org. Or, you can call our toll-free number at 1-800-227-2345 to talk to one of our cancer information specialists.

Last Medical Review: August 12, 2014 Last Revised: January 21, 2016

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