Neuroblastoma

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

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:

• Your child’s age when doctors diagnose the disease
• The stage of their disease
• Features of their cancer cells

Your child’s doctor will explain your child’s risk level.

It is important to find out if cancer is only in 1 place or has spread. This process is called staging.

Stages are based on whether:

• There are tumors in more than 1 place
• Surgeons can remove all of the tumor that they can see
• The cancer has spread and where
• The cancer affects their lymph nodes

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 bone marrow aspiration or biopsy. It shows if neuroblastoma has spread to the soft inner part of 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

Most children with neuroblastoma have surgery. The first surgery your child has may be a biopsy. This means doctors remove a small sample of tumor cells to check for cancer.

Doctors will remove as much of the tumor as possible. This depends on where the cancer is and its risk level. Sometimes, the tumor is removed during the same surgery as the biopsy.

In some children, the tumor has spread to other places in the body or is too large to remove safely during the biopsy. In this case, after the biopsy and diagnosis, your child will receive chemotherapy to help control 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 often use chemotherapy, radiation or both to kill any cancer cells that are left.

Your child will get medicine to make them 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 (systemic) chemotherapy means giving medicines that go throughout your child’s 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
• To kill any cancer cells that have spread to other parts of your child’s body

Children with neuroblastoma receive chemotherapy at our hospital campus in Seattle:

• Most often, while they stay in our 48-bed Cancer and Blood Disorders Center - Inpatient (as an inpatient)
• Sometimes, 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 your child has. 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 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.

Seattle Children’s has the ability to give a form of 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. Your child receives this infusion through a vein.

Our doctors have worked with the research groups COG and NANT to offer this therapy to children 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 children who are newly diagnosed with high-risk neuroblastoma.

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

High-dose chemotherapy treats tumors more effectively than lower-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 their healthy cells, which have been removed from your child’s body and stored before high-dose chemotherapy.

A second transplant, using cells from a healthy donor, is now part of standard therapy for children 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. 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.

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

Our national leadership in neuroblastoma research means more options for children with high-risk, refractory or recurrent neuroblastoma. These options are not offered at most treatment centers.

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

• Learn about our phase 1 clinical trials — STRIvE — that reprogram the body’s infection-fighting T cells to find and destroy neuroblastoma cells.
• 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.
• Read more about cancer research and clinical trials at Seattle Children’s.

• Our doctors help set national standards for neuroblastoma care. They are global leaders in developing new treatments for children at all stages and risk levels of the disease. Risk level refers to how hard the neuroblastoma is to treat.
• If your child’s treatment includes a bone marrow transplant, we perform the transplant here at Seattle Children’s, working closely with our partner Fred Hutchinson Cancer Center. Fred Hutch pioneered bone marrow transplants and is one of the largest transplant centers in the world.

Seattle Children’s is the only center in the Pacific Northwest that belongs to NANT (New Approaches to Neuroblastoma Therapy). NANT works to find new treatments for patients with neuroblastoma that is not well controlled by treatment or comes back. 

As leaders in neuroblastoma research, we can offer the very latest treatments being studied in clinical trials. The newest (phase 1) treatment options are especially important if your child’s neuroblastoma:

• Is high risk
• Resists treatment
• Comes back after treatment

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

• Reprogramming the body’s infection-fighting T cells to find and destroy neuroblastoma cells. Learn more about phase 1 clinical trials STRIvE. We have one of the nation’s largest pipelines of CAR T-cell immunotherapy trials for children and young adults.
• A way to get radiation therapy inside your child’s body and into their cancer cells via the bloodstream. Learn more about I-131-MIBG.
• New mixtures of anticancer (chemotherapy) medicines.
• Combining targeted therapies with chemotherapy or radiation.
• Studies to identify biomarkers that could lead to new targeted therapies for some forms of neuroblastoma.

• Survival rates for children we treat for neuroblastoma are better than the national average.
• 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.

• Our specialty is treating children’s disease while helping them 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, 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.

• A diagnosis of neuroblastoma can be scary. We help take positive steps right away by offering appointments within 1 to 3 days to children who might have cancer. If needs are not urgent, new patients can be seen in 1 to 2 weeks.
• 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.