Neuroblast­oma

Neuroblastomas most often grow in children younger than age 5. These rare cancers begin in immature nerve tissues called neuroblasts. With neuroblastoma, cells in these tissues start growing in ways that aren’t typical.

Sometimes, healthcare providers diagnose neuroblastoma in fetuses. Your provider may see signs of this cancer during a prenatal ultrasound. But often, neuroblastomas don’t show up until after birth.

Depending on how your child’s cancer starts, it can cause many different symptoms, ranging from skin discoloration to eye issues to pain to breathing problems. Because it can have so many different symptoms, neuroblastoma is often challenging to diagnose. That’s why finding pediatric providers experienced in diagnosing and treating this condition is so important.

What to expect at your child’s first visit

Your child’s first visit begins with a physical exam and a neurological exam. We’ll also talk with you about your child’s symptoms and family medical history so we can get a good picture of their health. We might also do testing to help us confirm a neuroblastoma diagnosis.

Blood tests

Your child will likely have several blood tests to see if there are any signs of cancer in their blood. A complete blood count (CBC) tests for certain substances and amounts of different kinds of cells, like white or red blood cells, and also hormone levels.

Urine (pee) tests

We’ll also look at a sample of your child’s urine (pee) under a microscope. This test is called a urinalysis. It lets us check the level of natural chemicals in their body. We also can look at levels of proteins called urine catecholamines, which about 90% of neuroblastomas secrete. Tracking the levels of these proteins can help us determine how much tumor burden is in your child’s body. Tumor burden is a measure of how many gene mutations (changes) are inside the cancer cells.

Imaging tests

Our experts may also look closely at your child’s bones and organs using pictures (imaging tests). Your child may have:

• X-rays: A chest X-ray or an abdominal (belly) X-ray lets us see where the tumor is and how it might be affecting other areas of your child’s body.
• Ultrasound: Painless ultrasound testing uses high-frequency sound waves to take pictures of soft tissues inside your child’s body.
• CT scan: When we do a CT scan, we’ll inject a special dye into one of your child’s veins and then do a series of X-rays. The dye makes it easier for us to look inside your child’s body and see abnormal tissue and tumors in the pictures.
• MRI: An MRI uses radio waves and a magnet to take pictures of your child’s soft tissues to look for damage or other abnormal things.
• Meta-iodobenzylguanidine (MIBG) scan: In this nuclear medicine imaging test, we’ll inject a safe, radioactive chemical that specifically finds neuroblastoma cells – 123-iodinated MIBG radiotracer – into one of your child’s veins. The next day, we’ll do an MIBG scan with a special scanner that takes pictures of your child’s organs and see where the MIBG radiotracer is. It will likely go to any areas in your child’s body where there are neuroblastoma cells.
• PET scan: Another nuclear medicine test, a PET scan lets us find all areas of neuroblastoma cells in your child’s body, especially in the rare case when the tumor doesn’t “light up” on the MIBG scan.

Biopsies

If we decide to do a tissue biopsy on your child, we’ll remove a small tissue sample while they’re asleep under general anesthesia or heavy sedation (they won’t feel any pain) and send it to the laboratory for testing.

Our pathologists will look at this tissue under a microscope to see if there are any signs of neuroblastoma. We can also look for changes to tumor cell DNA, genes and chromosomes to see what risk category your child falls into.

We might also do a bone marrow biopsy, which tests your child’s bone, bone marrow (spongy center of their bones) and blood for signs of cancer.

Meet Our Neuroblastoma Team

When you choose Cleveland Clinic Children’s for your child’s neuroblastoma diagnosis and treatment, you’ll benefit from our team approach to care. Your child will have the support of expert pediatric providers from many specialties — working together to design the most personalized treatment for the best possible outcomes. Their care team could include:

• Pediatricians.
• Pediatric neurologists.
• Pediatric oncologists.
• Pediatric radiation oncologists.
• Pediatric neurosurgeons.
• Pediatric radiologists.
• Pediatric pathologists.
• Pediatric nurse care coordinators.
• Child psychologists.
• Child life specialists.
• Social workers.
• Pediatric dietitians.
• Genetic counselors.
• Clinical pharmacists.

Your child’s pediatric care team will use your child’s test results to craft a customized treatment plan for them. We’ll also answer all your questions and talk with you about your goals for your child’s treatment.

Cleveland Clinic uses a cancer staging system to give the neuroblastoma a stage. Staging helps our experts know if neuroblastoma is a low or intermediate risk, which means it’s more likely to have an excellent outcome, or a high risk and harder to treat.

Your child’s providers will recommend treatments based on your child’s age, neuroblastoma risk and specific genetic changes in the tumor (tumor biomarkers).

Treating low- or intermediate-risk neuroblastoma

Our experts use a range of therapies to treat neuroblastomas that are low or intermediate risk. We may recommend:

• Watchful waiting (observation): When neuroblastoma is low risk, your child may not need treatment right away, or ever. Our experts check your child frequently to make sure cancer isn’t growing or spreading (metastasizing). Sometimes, the tumor can shrink over time and eventually shrivel away to nothing, without any treatment at all. This happens most commonly in young infants.
• Surgery: Our pediatric surgeons do surgery to remove certain neuroblastoma tumors. Children with intermediate-risk neuroblastoma usually have surgery. And we might also recommend it for children in the low-risk category who are being closely observed, but the tumor is growing significantly. Depending on the neuroblastoma stage, your child may need chemotherapy, too.

Treating high-risk neuroblastoma

If your child has high-risk neuroblastoma, our specialists treat them with therapies designed to eliminate cancer and prevent it from coming back (recuring). We may recommend:

• Medications: Your child might take drugs that destroy the cancer cells, so they won’t multiply, or that restrict blood flow to the tumor. There are also medications that can help keep cancer from coming back after treatment. Others work on tumors that the first treatment didn’t stop. If your child has high-risk neuroblastoma, their provider will give them various medications during treatment.
• Systemic therapy for neuroblastoma: We may treat your child with powerful drugs that travel through their bloodstream to destroy cancer cells. Our specialists may recommend chemotherapy, immunotherapy (agents that target specific parts of the cancer cells), differentiating therapy with isotretinoin (or retinoic acid) to help the cancer cells mature into noncancerous ones or targeted therapy — recently used in clinical trials as a maintenance therapy after treatment for high-risk neuroblastoma.
• Stem cell transplant: Our experts may recommend a high dose of chemotherapy with stem cell transplant. If your child has stem cell treatment, they may take a retinoid drug called 13-cis-retinoic acid to help keep the cancer from returning.
• Radiation therapy for neuroblastoma: Our specialists use high-energy beams to treat tumors. Radiation therapy helps destroy cancer cells and prevents them from multiplying.
• Iodine 131-MIBG therapy: Specialists sometimes use this treatment to target and kill neuroblastoma tumor cells. We’ll inject radioactive iodine into your child’s veins so it can travel to cancer cells and destroy them with radiation.

Taking the Next Step

Learning that your child has neuroblastoma can be unsettling, to say the least. But you’re not alone on this journey. At Cleveland Clinic Children’s, we make sure you and your family have the support you need throughout diagnosis and treatment. Our pediatric experts get to know your child and design a personalized treatment plan that offers them the best possible neuroblastoma outcomes.