Neuroblastoma

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What is neuroblastoma?

Neuroblastoma is cancer that starts in young nerve cells called neuroblasts. In a healthy child, these cells become the nerves that control functions like heartbeat and blood pressure. In neuroblastoma, some of the neuroblasts do not mature. Instead, they grow into tumors.

Doctors do not know what causes the changes in cells that lead to this disease.

Many families have never heard of neuroblastoma before their child develops it. Doctors at our Neuroblastoma Program are known worldwide for treating babies, children, teens and young adults with this condition. The Neuroblastoma Program is part of our Cancer and Blood Disorder Center at Seattle Children's.

Cancer and Blood Disorder Care at Seattle Children's

Our team treats babies, children, teens and young adults, including those with the hardest-to-treat cancers. We provide treatment options that many centers do not offer.

What are the symptoms of neuroblastoma?

In most cases, parents and doctors do not know the disease is there until tumors grow large enough to be felt or to cause symptoms.

Symptoms of neuroblastoma depend on where the tumor or tumors are. Most often, neuroblastoma tumors start in the nerves of the adrenal glands, which sit on top of the kidneys. But these tumors can start in any part of the body. The chest, neck, pelvis and spinal cord are other common places.

These symptoms can be caused by neuroblastoma or other health problems. Check with a doctor about:

A lump that you can see or feel
Pain or weakness in some part of the body
Enlarged belly or trouble having a bowel movement
Feeling tired, crabby or short of breath
Being dizzy, lightheaded or paler than usual
Bulging eyes or dark circles around the eyes

How is neuroblastoma diagnosed?

To diagnose neuroblastoma, the doctor will:

Do a full body exam
Ask about your child's health and recent symptoms
Order special blood tests and imaging

Your doctor may also arrange for a biopsy to look at cells under the microscope.

If your child may have neuroblastoma, other tests will help tell the risk level and if it has spread.

Risk Levels and Stages of Neuroblastoma

Doctors determine the cancer risk level and stage so they can plan the best treatment.

Risk levels
Risk level refers to how hard the neuroblastoma is to treat.

In general, low-risk and intermediate-risk neuroblastoma have a good chance of being cured. High-risk neuroblastoma is very hard to cure.

The risk group is based on:
- Age when doctors diagnose the disease
- The stage of disease
- Features of cancer cells
Your doctor will explain the risk level.
Stages

It is important to find out where the cancer is in the body. This process is called staging.

Stages are based on whether tumors are in more than 1 place in the body, and where those places are.
Tests
To help tell the stage of your child’s neuroblastoma and plan the best treatment, doctors will:
- Remove a small sample of tissue to check under a microscope. This is called a biopsy. The doctor may do a biopsy on any tumor that is found, as well as the soft inner part of the bone (bone marrow).
- Take pictures inside your child’s body (imaging studies) to look for tumors or places where cancer is active. Pictures may be made using:
  - X-rays
  - CT (computed tomography) scan
  - MRI (magnetic resonance imaging) scan
  - MIBG (metaiodobenzylguanidine) scan
  - Positron emission tomography (PET) scan

How is neuroblastoma treated?

Our focus is helping your child beat their disease and thrive. Everyone in the Neuroblastoma Program works to cure your child’s disease, support your family during treatment, prevent serious side effects and provide follow-up care.

Our experts are experienced in treating babies, children, teens and young adults with all risk levels and stages of neuroblastoma. Year after year, U.S. News & World Report ranks our Cancer and Blood Disorder Center among the best pediatric oncology programs in the country. As leaders in neuroblastoma clinical care and research, we can offer advanced treatments that many centers do not provide.

We tailor treatment to your child's unique needs, based on:

Whether their neuroblastoma is low, intermediate or high risk
How well it responds to first treatment
Whether it comes back after treatment (recurrent)
If there are specific changes in the of the tumor

Surgery

Most people with neuroblastoma have surgery. The first surgery is usually a biopsy. This means doctors remove a small sample of tumor cells to check for cancer. This first surgery may remove the whole tumor, but this depends on the type of neuroblastoma.

After the biopsy, sometimes we give chemotherapy to shrink the tumor. Later, surgeons remove as much of the tumor as possible. Studies have shown excellent results in low- and intermediate-risk neuroblastoma even if the whole tumor is not removed.

Even when doctors can remove the whole tumor, they may suspect or know that cancer cells are still in your child's body. They may use chemotherapy, radiation or both to kill any cancer cells that are left.

Your child will get medicine to sleep without pain (general anesthesia) during surgery. Surgery is performed at our hospital campus in Seattle.

Learn more about surgery to treat cancer at Seattle Children’s.
Whole-body chemotherapy
Whole-body (systemic) chemotherapy means giving medicines that go throughout the body to kill cancer cells. For neuroblastoma, the medicine most likely will be injected into your child’s vein. This is called an intravenous (IV) infusion.

Your child’s doctors may suggest whole-body chemotherapy:
- As the main treatment
- To help shrink a tumor before another type of treatment, such as surgery
People with neuroblastoma receive chemotherapy at our hospital campus in Seattle:
- Most often, this occurs while they stay in our 48-bed Cancer and Blood Disorders Center - Inpatient unit.
- Sometimes, this occurs in our outpatient infusion unit (by clinic visits as a day procedure)
The mix of medicines and how long they are given depend on the type of neuroblastoma. Researchers are studying new mixes of medicines to find the ones that work best against each type of neuroblastoma.

See more about getting chemotherapy at Seattle Children’s.
Radiation therapy using X-rays or protons

Radiation therapy uses high-energy particles to kill cancer cells. A machine sends a dose of radiation into the body. Doctors aim the radiation at the place where they know or suspect there is cancer.

We treat neuroblastoma using X-rays and proton therapy. The best radiation treatment for your child depends on their tumor.
I-131-MIBG therapy

Seattle Children’s is one of the few centers in the country to offer the treatment that gets radiation into your child’s cancer cells via the bloodstream. This type of radiation is called I-131-MIBG therapy.

Radioactive iodine is attached to a chemical called MIBG that targets neuroblastoma tumors. We give this infusion through a vein.

MIBG treatment is different from the MIBG scans used to diagnose neuroblastoma. It is commonly used for people with high-risk neuroblastoma that does not respond well to treatment or that comes back.

Seattle Children’s doctors also are studying whether I-131 MIBG therapy will benefit people who are newly diagnosed with high-risk neuroblastoma. Our MIBG team works with the research groups COG and NANT to offer this therapy through clinical trials.
High-dose chemotherapy and stem cell transplant

If your child has high-risk neuroblastoma, they may get very high doses of chemotherapy medicines and a transplant of their own stem cells. This is called an autologous stem cell transplant.

People with some tumor types need high-dose chemotherapy. But the drugs damage the bone marrow’s ability to make new blood cells. That is why your child needs an infusion of healthy cells, which have been removed from their body and stored before high-dose chemotherapy.

A second autologous stem cell transplant (tandem transplant) is standard therapy for people with high-risk neuroblastoma. A national phase 3 COG clinical trial showed that the double transplant significantly improved patients’ 3-year survival.

We do the transplants here at Seattle Children’s, working closely with our partner Fred Hutch. Fred Hutch pioneered stem cell transplants and is one of the largest transplant centers in the world. Learn more about our Pediatric Blood and Marrow Transplant Program.

After transplant, your child will get 6 more months of treatment. The aim is to kill any cancer cells that may regrow and cause the disease to come back.

Research and Clinical Trials for Neuroblastoma

Many of our patients with neuroblastoma take part in research studies along with their standard medical treatment. These studies are called clinical trials.

As national leaders in cancer research, we can offer our patients the very latest neuroblastoma treatments being studied. This means more options for patients with high-risk, refractory or recurrent neuroblastoma.

Seattle Children’s is a leading member of the Children’s Oncology Group (COG) and the only center in the Pacific Northwest that belongs to NANT (New Approaches to Neuroblastoma Therapy). NANT works to find new treatments for neuroblastoma that is not well controlled by standard treatment or that comes back after treatment.

Your doctor will talk with you about any new treatment options that might help. Then you can decide if you want to take part in a research study. It’s your choice.

At Seattle Children’s, our current research studies include:

Putting inside cancer cells via the bloodstream (I-131-MIBG)
New mixtures of anticancer (chemotherapy) medicines with therapy
Combining with chemotherapy or radiation
Studies to identify that could lead to new targeted therapies for some forms of neuroblastoma

Learn more about cancer clinical trials at Seattle Children's

Find many clinical trials offered at Seattle Children’s on our Current Research Studies page or on ClinicalTrials.gov. Read our guide about searching for trials on ClinicalTrials.gov (PDF).
Contact us at 206-987-2106.
Email us at [email protected].
Read more about cancer research and clinical trials at Seattle Children’s.
Learn about participating in clinical trials at Seattle Children’s.

Follow-Up Care for Neuroblastoma

Follow-up care is important after treatment ends. The follow-up routine will depend on your child’s cancer and their treatments. Most of our patients visit every 3 to 12 months for 5 years.

Most of our patients come to Seattle Children’s hospital campus for follow-up care. If you live far from Seattle, your child may get some follow-up care from a cancer doctor in your own community.

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

Any signs that neuroblastoma is returning
Side effects of the therapy that may happen months or years after treatment

Our Cancer Survivor Program provides long-term follow-up care to help young people stay healthy after being treated for cancer in childhood.

The Long-Term Follow-Up program for people who have had a stem cell transplant is offered through our partner Fred Hutchinson Cancer Center.

Why choose Seattle Children's for neuroblastoma care?

Year after year, our Cancer and Blood Disorders Center ranks among the nation’s best pediatric oncology programs by U.S. News & World Report. The treatment of neuroblastoma requires very specific expertise in oncology, surgery, and radiation oncology. In addition to treating patients from the immediate Puget Sound area, Seattle Children’s serves as a neuroblastoma referral center for patients in the entire Pacific Northwest and beyond.

Experts at treating all stages and risk levels of neuroblastoma

Our doctors help set national standards for neuroblastoma care. They are global leaders in developing new treatments for all stages and risk levels of the disease. Seattle Children’s oncologists, surgeons and radiation oncology specialists have extensive experience in treating neuroblastoma.
Your child will benefit from the work of physician-scientists at Fred Hutchinson Cancer Center and UW Medicine, as well as at Seattle Children’s. The National Cancer Institute has named our partnership a comprehensive cancer center.

The most advanced treatments and clinical trials, including immunotherapy

We offer a full range of treatments, with advanced options such as , and MIBG therapy (delivering radiation to cancer cells via the bloodstream). Seattle Children’s is the only center in the Pacific Northwest and one of a few institutions in the country that offers MIBG therapy.
As leaders in neuroblastoma research, we can offer the very latest treatments. This includes options being studied in phase 1 clinical trials through the NANT consortium.

Specialists in caring for newborns through young adults

Our specialty is treating disease while helping our patients grow up to be healthy and productive adults.
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, palliative care, pharmacy, physical therapy and emotional health. Read more about the supportive care we offer.
Children and teens do not react to illness, pain and medicine in the same way as older 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 treatment based on years of experience and the newest research on what works best and is safest.
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.

Support for your whole family

A diagnosis of neuroblastoma can be scary. We help your family all along the way.
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 family through the challenges. We connect you to community resources and support groups.
At Seattle Children’s, we work with many 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.

What to Expect

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

Neuroblastoma Team

In addition to the neuroblastoma experts listed below, your child will receive care from the most experienced pediatric Solid Tumor team in the Pacific Northwest.

Jump to Role:

Oncologists

Our Neuroblastoma Program is led by doctors with special training in diagnosing, treating and preventing blood diseases and cancers. That branch of medicine is called hematology-oncology.

Neuroblastoma Program radiation oncologists

Our radiation oncologists are highly trained in using high-energy beams to treat cancer, tumors and other diseases.

Neuroblastoma Program advanced practice providers

Advanced practice providers include advanced registered nurse practitioners (ARNPs) and physician assistants (PAs). They work closely with doctors and can provide care independently. These providers diagnose and treat patients and can prescribe medicines. All during treatment, they can answer questions, share advice and teach patients and families.

Neuroblastoma Program nuclear medicine technologists

Our nuclear medicine technologists prepare radioactive material. It is used to make images of the inside of your child’s body. The images help doctors diagnose disease and track treatment.

Lisa Aldape, CNMT, Nuclear Medicine PET/CT supervisor

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.

Providers, see how to refer a patient.

Scheduling an appointment

How to schedule an appointment at Seattle Children’s.
If you already have an appointment, learn more about how to prepare.
Learn about resources such as useful links, videos and recommended reading for you and your family.