Conditions

Brain Tumors

With the nation’s top leaders in brain tumor care and research, our Brain Tumor Program offers some of the most advanced treatments, neurosurgeries and clinical trials of any children’s hospital. We have the largest program in the Northwest and 1 of the largest in the world.

Our Brain Tumor Program brings together a coordinated care team of experts in cancer care, the nervous system and neurosurgery.  We are very experienced in treating babies, children, teens and young adults with all types of tumors affecting the brain and spinal cord (central nervous system or CNS).

The survival rates of children we treat for brain tumors are consistently among the best in the country and typically 10 percent higher than the national average.

A teen in a Harvard T-shirt "I was told it was about a two-year recovery process after surgery and that after two years, that was as good as I was going to get. But, every year, I somehow reach a new height.”

– Liesel Von Imhof. Read about Liesel’s journey from Seattle Children's brain tumor patient to Harvard graduate.

What are brain tumors?

Tumors are growths that are not normal. Lumps of tissue form when abnormal cells multiply and grow, sometimes without stopping.  Whether cancerous (malignant) or not (benign), brain tumors are in a very important place and can be serious.

Many different types of brain tumors happen in children, teens and young adults. In most cases, doctors do not know exactly what causes these tumors or how to prevent them.

What are the symptoms of brain tumors? 

Many children with brain tumors show general symptoms at first, like headache or vomiting. Other symptoms depend on where the tumor is and how it affects nearby parts of the brain or spinal cord. Most often, brain tumor symptoms come on slowly. But sometimes they start suddenly.

A brain tumor or other health problems can cause the symptoms below. See a doctor to find out the cause if your child has:

  • Trouble with movements, such as walking or writing
  • Loss of balance
  • Being numb or weak in part of the body
  • Being unable to move part of the body
  • Slow speech or trouble speaking
  • Changes in vision, hearing or other senses
  • Nausea or vomiting
  • Headache in the morning or headache that goes away after vomiting
  • Feeling sleepy for no reason or having a change in energy
  • Changes in personality, mood or behavior
  • Seizures

How are brain tumors diagnosed?

Seattle Children’s has experts who precisely diagnose your child’s tumor using a technique called molecular profiling and provide the best treatment. Few centers across the country have the expertise of our precision medicine team.

This “integrated molecular diagnosis” testing may give information about the genetic changes in the tumor, which helps your care team confirm the tumor subtype and personalize treatment for your child. Our team is helping create international standards for integrated molecular diagnosis for children with brain tumors.

Knowing a child’s brain tumor subtype can open the door to treatment that increases survival, as shown in a clinical trial that charts a better course for kids with high-risk medulloblastoma (muh-dul-o-blas-TOE-muh). This rare cancer affects the lower back part of the brain.

Most children who have a brain tumor have no clear risk factors. But we may discover a genetic change in a child that makes it more likely they will get a brain tumor. This is called a genetic cancer predisposition.

These include genetic diseases such as:

Researchers are discovering other cancer predisposition syndromes all the time. Our team’s genetic counselor can advise your family about them.

As part of the diagnosis, we will take pictures (imaging studies) of the inside of your child’s head or spine using:

  • CT (computed tomography) scan
  • MRI (magnetic resonance imaging) scan of the whole brain and spine

If we find a tumor, we often need to do surgery to learn more about the type of tumor it is. The surgeon may do a biopsy or may remove the entire tumor and other nearby tissue. We use a microscope to look at the tumor cells and tissue and learn more about it.

  • Grading brain tumors

    Doctors “grade” a tumor based on how the tumor cells and tissue look under the microscope. In general, a higher-grade tumor grows faster and a lower-grade tumor grows more slowly. Even a lower-grade tumor can be serious due to its location in the nervous system.

    Brain tumors can be either noncancerous (benign) or cancerous (malignant).

    • Benign tumors are low-grade tumors and generally not considered cancer. Benign tumors are either slow growing or sometimes have already stopped growing by the time they are found.
    • Malignant tumors are high-grade. They are a form of cancer and always need treatment.
  • Staging brain tumors

    “Staging” a tumor includes testing to see whether the tumor is in 1 place (localized) or more places (metastatic). Staging includes:

    • An MRI of your child’s whole brain and spine.
    • A lumbar puncture to check the cerebrospinal fluid for tumor cells. This is also called a spinal tap.
    • Blood tests for some types of tumors that release proteins called “tumor markers” into the blood. These can help doctors diagnose the type of tumor and check how the tumor responds to treatment.

A girl in stocking cap “The surgery was risky and giving the green light was the most difficult decision I’ve ever made, but that day in January ended up being the happiest of my life…We never dared to think that the doctors could get 100% of Avery’s tumor while protecting what made our daughter herself.”

– Avery’s mom Kristie Berg. Read about Avery's journey.

How are brain tumors treated?

Our treatment goal is to give your child or teen the best chance of a long and healthy life. Most children with brain tumors are treated successfully. But tumors and their treatments may cause health problems and affect your child’s central nervous system. The brain tumor team works together to coordinate the best care for your child. Read about our Brain Tumor Program.

We will suggest a treatment plan based on:

  • The type of tumor
  • Where the tumor is
  • Whether the tumor is localized or has spread (metastatic)
  • Whether the tumor is safe to remove by surgery
  • Your child’s age
  • Their overall health
  • Your family’s preferences

Surgery

Surgery is an important part of diagnosing and treating most children with tumors of the brain or spinal cord. Our neurosurgeons are among the most experienced in the nation at treating children with brain tumors.

Our neurosurgery team uses advanced equipment and the most current and well-researched procedures. These include:

  • Craniotomy: We remove as much of the tumor as is safe after removing part of the skull.
  • Laminectomy: We remove spinal cord tumors or repair spinal nerve roots.
  • Laser ablation surgery: This minimally invasive procedure uses light to heat and destroy unwanted cells of slow-growing tumors deep in the brain. Seattle Children’s is the only pediatric hospital in the Pacific Northwest, and 1 of a few in the country, to offer laser ablation for brain tumors.
  • Biopsy: This procedure gets a tissue sample for testing. At Seattle Children’s we can biopsy tumors in parts of the brain that are difficult to reach, such as the brainstem. Not all hospitals can do this. We use stereotactic biopsy techniques. These include CT (computed tomography) and MRI (magnetic resonance imaging) scans and an advanced surgical tool (ROSA Brain).

Read how we treat cancer with surgery. Learn more about our Neurosciences Center.

Radiation therapy

Radiation therapy uses high-energy beams to destroy cancer cells. Tumors are very sensitive to radiation compared to healthy tissue. But radiation can harm a child’s healthy cells or their developing nervous system. Our radiation oncologists are very experienced in caring for children. They work with the rest of the team to decide whether and how to use radiation therapy.

The best radiation treatment for your child depends on their tumor type and location. Children treated for brain tumors at Seattle Children’s have access to advanced radiation therapies that can help limit damage to the healthy nervous system.

Options include:

  • Proton beam therapy, which uses positively charged atomic particles (protons). This is an advanced type of radiation designed to direct radiation to the tumor while sparing healthy tissues.
  • Different ways of focusing radiation more precisely on the tumor: intensity-modulated radiation therapy (IMRT), gamma knife (also called fractionated stereotactic radiosurgery) and conformal radiation. Giving radiation in these ways helps prevent harm to healthy tissue.

Learn more about radiation therapy at Seattle Children’s.

Chemotherapy

Chemotherapy means giving medicines to kill tumor cells. It is also called “chemo.” Many of the first types of medicines used to cure cancer were “cytotoxic.” This means that the medicines kill dividing cells, which can also affect healthy cells. Newer treatments for tumors work in different ways. These include:

  • Targeted therapy, which works directly on an abnormal protein specific to the tumor cell
  • Immunotherapy, which helps the immune system fight the tumor

Our doctors are experienced in the medical care of children with brain tumors (neuro-oncologists). We can help you decide whether to use anticancer medicine and the best type.

We may suggest medicine as your child’s main treatment. Or we may recommend medicines along with surgery and radiation. We will adjust your child’s treatment or supportive care based on how your child is doing.

Most children get medicine for brain tumors through a vein or by mouth. Sometimes medicine is given by an injection into the spinal fluid or via a tube into the fluid-filled spaces in the brain (ventricular catheter).  

See more about getting chemotherapy at Seattle Children’s.

Clinical trials, including immunotherapy

Many of our patients with brain tumors take part in research studies along with their standard medical treatment. These are called therapeutic studies or clinical trials. Many of our studies assess new treatments for specific tumors or mutations.

Your child’s doctor will talk with you about any research options that might help your child. Then you can decide whether you want to take part. Research is always optional.

Seattle Children’s Brain Tumor Program offers dozens of unique studies, including BrainChild. This group of phase 1 trials is testing CAR T-cell immunotherapies in children and young adults with certain relapsed or difficult-to-treat (refractory) brain tumors. BrainChild-04 is open to patients with diffuse intrinsic pontine glioma (DIPG), among other refractory tumors.

We lead research and clinical trials through:

We are the only center on the West Coast that is a member of both PNOC and CONNECT.

Some clinical trials have a goal of collecting information (registries) and samples (banking studies) to help with the future of research. Taking part in baking studies may give families new information about their child's tumor. This type of study is open to any child with a tumor and their parents. 

Learn more about cancer clinical trials at Seattle Children’s

Dr. Sarah Leary

“Not only will the results from this trial save lives in the future, but some of the kids who were part of the study are alive today because they had access to the study.”

– Dr. Sarah Leary, medical director of the Pediatric Brain Tumor Program.  

Learn more about this monumental clinical trial for high-risk medulloblastoma.

Treatment by Tumor of Type

Hundreds of types of tumors start in the brain or spinal cord. We treat them all. Some common ones are described here. Your doctors will talk with you in detail about your child’s tumor.

Low-grade glioma (LGG)

Low-grade glioma (glee-OH-muh) is the most common type of tumor in children. Low-grade means slow-growing.

Some types of LGGs are:

  • Pilocytic astrocytoma (pie-LO-sit-ic ah-stro-sigh-TOE-muh)
  • Pilomyxoid astrocytoma (pie-LO-mix-oid)
  • Diffuse astrocytoma

It is very rare for a low-grade glioma to become life-threatening once it is properly diagnosed and treated. Treatment is aimed at preventing the tumor from affecting how your child’s brain works.

We may treat a low-grade glioma by surgery alone, depending on where it is in the brain.

Treatment options also include:

  • Radiation therapy using very focused beams.
  • Chemotherapy for children who need treatment other than surgery.
  • Observation or “watchful waiting.” Some LGGs may not need any treatment. If that is the case for your child, the Brain Tumor team will keep a close watch.

High-grade glioma (HGG)

HGGs can happen in any part of the brain or spinal cord. Most often we find them in the upper part or front of the brain (cerebrum). Diffuse midline glioma is 1 type of HGG.

Surgery, radiation therapy and newer medicines have improved survival for children with HGG.

Diffuse intrinsic pontine glioma (DIPG) and other diffuse midline gliomas with H3K27 alterations (DMG)

Diffuse intrinsic pontine glioma (dih-FYOOS in-TRIN-sik PON-teen glee-OH-muh) starts in a central part of the brainstem called the pons.

The pons controls important functions like breathing and heart rate. DIPG can put pressure on the nerves that control movement of the face, eyes, speech and swallowing. Because of the location, it is currently not possible to remove all of these tumors by surgery. DIPGs are always considered high-grade.

At Seattle Children’s we can biopsy these tumors, then analyze them for genetic mutations. This helps us know if specific clinical trials or new treatments might help your child.

Treatment with radiation and chemotherapy often improves symptoms and prolongs life. Still, DIPG does eventually progress, and there are no standard therapies that cure it yet. This is why we offer research studies of novel treatments for children with DIPG or DMG with H3K27 alterations. We offer 1 of the only CAR T-cell immunotherapy trials for children and young adults with DIPG.

Learn about the BrainChild trials.

Embryonal tumors (medulloblastoma, PNET and ATRT)

Some types of embryonal tumors (em-BRY-uh-nul) include:

  • Medulloblastoma (meh-dull-oh-blas-TOE-muh)
  • Pineoblastoma
  • Embryonal tumor with multilayered rosettes (ETMR)
  • Atypical teratoid/rhabdoid tumors (ATRT)

These high-grade tumors may grow quickly and always need treatment. In addition to surgery, we use a combination of radiation and chemotherapy for older children. We offer a “radiation-sparing” approach for young children. Research led by Seattle Children’s doctors has improved survival and changed treatment all over the world for children with embryonal tumors.

Ependymoma

Ependymoma (eh-PEN-di-moh-ma) may happen in any area of the central nervous system.

Most children with these tumors are treated with surgery, often along with radiation therapy. Chemotherapy is effective for some children.

Tumors of the pituitary

Tumors near or in the pituitary gland happen most often in teens or young adults. These tumors may cause hormonal changes or pressure on the nerves that control vision. Sometimes, pituitary tumors are noticed on an MRI (magnetic resonance imaging) for an unrelated reason such as headaches.

Pituitary tumors are almost never life threatening once properly diagnosed and treated. Your child’s doctor may recommend:

  • Surgery.
  • Medicine.
  • Observation or “watchful waiting.” This means checking your child’s tumor regularly to see if it causes problems that need treatment.

Follow-up Care

Follow-up care is important after treatment ends – no matter what type of treatment your child had. The follow-up routine will depend on the type of tumor your child had and their treatments. Most children visit the Brain Tumor Clinic at Seattle Children’s for follow-up care several times a year in the first few years after tumor treatment. They visit less often until adulthood. Your doctor will let you know the schedule that is right for your child.

During follow-up visits we will check your child for:

  • Any signs that the tumor is returning
  • How your child is growing and developing
  • How school or work is going
  • Effects that may happen months or years after treatment

Our Cancer Survivor Program provides long-term follow-up care to help young people stay healthy.

What to Expect

See what to expect when coming to Seattle Children’s Cancer and Blood Disorders Center.

Contact Us

If you would like an appointment, ask your child’s primary care provider to refer you to our Brain Tumor Program.

If you have a referral or would like a second opinion, contact the Cancer and Blood Disorders Center at 206-987-2106 or by email.

Scheduling an appointment

Providers, see how to refer a patient.

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