Conditions

Brain Tumors

What are brain tumors?

Tumors are growths that are not normal. They are lumps of tissue that form when abnormal cells multiply and grow without the normal controls to stop them. The brain, along with the spinal cord, make up what is called the central nervous system (CNS). 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.

Brain Tumors at Seattle Children’s

USNWR BadgeThe multidisciplinary team at Seattle Children’s Brain Tumor Program is very experienced in treating babies, children, teens and young adults with all types of tumors affecting the CNS. Our program is the largest in the Northwest and one of the largest in the world.

The Brain Tumor Program is part of our Cancer and Blood Disorders Center. If you would like an appointment, ask your primary care provider to refer you. If you have a referral or would like a second opinion, contact the center at 206-987-2106 or by email.

Providers, see how to refer a patient.

"Parents of children with ATRT refer to the disease as a beast. You have to hit it with everything you can…I am deeply appreciative of the efforts and hard work of Danica’s brain tumor team. They saved my girl’s life."  Audrey Taylor, Danica’s mom. Read about Danica’s treatment for a rare brain cancer

    • U.S. News & World Report consistently ranks our Cancer and Blood Disorders Center among the top pediatric oncology programs in the country.
    • Survival rates for children we treat for brain tumors are significantly better than the national average. This has held true for 20 years.
    • Through our partnership with Seattle Cancer Care Alliance (SCCA), our patients benefit from the work of physician-scientists at Fred Hutch and UW Medicine, as well as at Seattle Children’s. The National Cancer Institute has named our partnership a comprehensive cancer center.
    • Our Brain Tumor Program brings together doctors who are expert in the nervous system (neurosciences), brain surgery, cancer care (oncology) and related fields. Our pediatric neurosurgeons, neuro-oncologists and radiation oncologist all have focused training and experience in pediatric brain tumors far beyond what is required for board certification.
    • The whole team meets as a group each week at our Brain Tumor Board, and we see patients together in our weekly multidisciplinary Brain Tumor Clinic. Together, we review all the information on a patient, such as their health records, tests, images and pathology results. By combining our different skills, we can best coordinate your care and offer your child the safest and most effective treatment plan.
    • Physician-scientists in our Brain Tumor Program are national leaders in brain tumor research, including immunotherapy. Our treatment options include the best-known therapies as well as access to new information and treatments through research studies for children with all types of tumors. Very few children’s hospitals offer so many advanced treatments and research studies.
    • As partners in the Brtoman Baty Institute, our goal is to more effectively diagnose and individually treat people based on their cancer’s genetic profile. Through our precision medicine program, we develop new clinical lab tests such as gene sequencing. We will use this information to tailor care to your child’s unique situation.
    • If surgery is the best route to a cure for your child, we offer innovative, minimally invasive procedures using laser ablation and the ROSA™ robotic surgical assistant.
    • Our specialty is treating children’s disease while helping them grow up to be healthy and productive adults. We take care of your child from diagnosis through all phases of treatment and follow-up survivor care.
    • A team of caring experts will focus on your whole child. We don’t just treat their cancer. As needed, your child will receive care from specialists in nutrition, pain management, pharmacy, palliative care, physical therapy and emotional health. Read more about the supportive care we offer.
    • Children do not react to illness, pain and medicine in the same way as adults. They need – and deserve – care designed just for them. Our experts focus on how treatments today affect growing bodies in the future. We plan your child’s treatment based on years of experience and the newest research on what works best – and most safely – for children.
    • We know that teens and young adults with cancer have different challenges than young children. Our Adolescent and Young Adult Cancer Program focuses on their needs, which may include fertility preservation.
    • People who have been cured of cancer may be affected for months or years by their disease or treatment. Our Cancer Survivor Program provides long-term follow-up care to help children and young adults stay healthy after being treated for cancer in childhood.
    • Learning that your child has a brain tumor can be scary. We contact you to set up an appointment as soon as we receive your doctor’s referral.
    • During visits, we take time to explain your child’s condition. We help you fully understand your treatment options and make the choices that are right for your family.
    • Our doctors, nurses, child life specialists and social workers help your child and your family through the challenges of their illness. We connect you to community resources and support groups.
    • At Seattle Children's, we work with many children and families from around the Northwest and beyond. Whether you live nearby or far away, we can help with financial counseling, schooling, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.

Symptoms of Brain Tumors

Many children with brain tumors show general symptoms at first, like headache or vomiting. Other symptoms will depend on the tumor’s location and which structures of the brain or spinal cord it affects. Most often, brain tumor symptoms come on slowly. But sometimes they start suddenly.

These symptoms may be caused by a brain tumor or by other health problems. 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
  • Weight loss or gain for no reason

Diagnosing Brain Tumors

We will take pictures of the inside of your child’s head or spine. These imaging studies help the doctor tell whether your child has a tumor:

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

If a tumor is found, most children need surgery to find out exactly what type of tumor it is. Doctors may do a biopsy or may remove the entire tumor. We examine the tumor cells and tissue under the microscope.

  • For most children with brain tumors, we will recommend molecular profiling of the tumor to complete what is called your child’s “integrated molecular diagnosis.” This testing may give information about the genetic changes in the tumor, which helps your care team confirm the tumor subtype and recommend individualized treatment for your child. Our team is working to create international standards for integrated molecular diagnosis for children with brain tumors.

  • Most children who have a brain tumor have no clear risk factors. But sometimes the diagnosis of a tumor in a child leads to discovery of a genetic change that makes it more likely a child will get a brain tumor. This is called a “genetic cancer predisposition.” These include genetic diseases such as neurofibromatosis, Li-Fraumeni syndrome, Lynch syndrome and tuberous sclerosis. Other cancer predisposition syndromes are being discovered all the time, and our team’s genetic counselor can advise your family about them.

  • 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” 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.

Treating Brain Tumors

“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.

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.

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 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: The neurosurgeon removes as much of the tumor as is safe.
    • Laminectomy: This procedure is used to remove spinal cord tumors or to reach spinal nerve roots that need repair.
    • Laser ablation surgery: For some slow-growing tumors deep in the brain, laser ablation surgery may be an option. This minimally invasive procedure uses light to heat and destroy unwanted cells. Seattle Children’s is the only pediatric hospital in the Pacific Northwest, and one 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 and MRI scans and an advanced surgical tool (ROSA Brain).

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

  • 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), fractionated stereotactic radiosurgery (also called gamma knife) and conformal radiation. Giving radiation in these ways helps prevent harm to healthy tissue.

    Learn more about radiation therapy at Seattle Children’s.

  • 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 in the category of “cytotoxic” chemotherapy. This means that the medicines work to kill dividing cells and may also affect growing healthy cells. Newer treatments for tumors work in many different ways. These include:

    • Targeted therapy, which is designed to work directly on an abnormal protein specific to the tumor cell
    • Immunotherapy, which aims to help the immune system fight the tumor

    It is important that a doctor experienced in the medical care of children with brain tumors (neuro-oncologist) helps you to decide whether to use anticancer medicine and which type will be best for your child’s tumor.

    Your child’s doctors may suggest medical therapy as your child’s main treatment. Or your child may receive medicines along with surgery, radiation or both. Expert nurses and doctors will see your child often. They 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.

  • 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, sometimes for very specific types of tumors or even specific mutations.

    Unique studies offered through Seattle Children’s Brain Tumor Program include:

    • BrainChild is a group of phase 1 trials testing CAR T-cell immunotherapies in children and young adults with certain relapsed or difficult-to-treat (refractory) brain BrainChild-03 is one of the first CAR T-cell trials for patients with diffuse intrinsic pontine glioma (DIPG) tumors.
    • A phase 2/3 clinical trial of a tumor-targeting fluorescent imaging agent (tozuleristide) that aims to improve surgical outcomes in children with brain tumors.

    Seattle Children’s offers dozens of clinical trials for various types of brain tumors. 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.

    We lead research and clinical trials through:

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

    Learn more about cancer clinical trials at Seattle Children’s

Treatment by Type of Tumor

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

    Some types of LGG are:

    • Pilocytic astrocytoma
    • Pilomyxoid astrocytoma
    • 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.

    A low-grade glioma may be treated 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 Clinic team will keep a close watch.
  • Some types of high-grade gliomas include:

    • Anaplastic astrocytoma
    • Glioblastoma multiforme (GBM)

    HGGs can happen in any part of the brain or spinal cord.. Most often they are found in the upper part or front of the brain (cerebrum).

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

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

    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 so they can be analyzed for genetic mutations. This helps us know if specific clinical trials or new treatments are options for your child.

    Treatment with radiation and chemotherapy often improve symptoms a great deal and prolong life. Still, DIPG does eventually progress, and at this time there are no standard therapies that cure it. This is why we offer research studies of novel treatments for children with DIPG or diffuse midline glioma (DMG) with histone 3 mutations. We offer one of the only CAR T-cell immunotherapy trials for children and young adults with DIPG.

    Learn about the BrainChild-03 trial.

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

    • Medulloblastoma (pronounced MED-you-low-blast-OH-ma)
    • 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 (pronounced eh-PEN-di-moh-ma) may happen in any area of the central nervous system.

    Most children with these tumors are treated with surgery and radiation therapy. Sometimes surgery alone is used. Chemotherapy is effective for some children.

  • 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 how to prepare and what to expect when coming to Seattle Children’s Cancer and Blood Disorders Center.

Meet Your Team

Professionals from many fields work together to plan and give care to our patients with brain tumors. Providers in the Brain Tumor Program include:

Contact Us

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

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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Paying for Care

Learn about paying for care at Seattle Children’s, including insurance coverage, billing and financial assistance.

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