Early Detection, Diagnosis, and Staging of Neuroblastoma

Learn about the signs and symptoms of neuroblastoma, the tests that may be done for it, and the outlook for those with a diagnosis.

Can neuroblastoma be found early?

Some neuroblastomas can be found early, before they start to cause any signs or symptoms. Neuroblastomas can often be seen by ultrasound. Ultrasounds done during pregnancy may find neuroblastomas before birth.

Neuroblastoma can be found by chance in young children without any symptoms during tests done to look for other childhood diseases or during regular medical checkups.

But most often, neuroblastoma is first detected because of signs or symptoms a child is having. In most cases screening, or testing for neuroblastoma without any signs or symptoms, is not recommended for infants and children.

Screening for neuroblastoma in high-risk children

In rare cases, testing might be recommended for infants who are at increased risk, such as those with a family history of neuroblastoma or a known condition or gene change associated with neuroblastoma. Testing in these cases includes urine tests, an abdominal ultrasound, and chest x-ray to look for neuroblastoma when children are young and at highest risk. If there is a family history and genetic testing has not been done, your care team may suggest genetic testing before recommending additional tests.

What are the signs and symptoms of neuroblastoma?

Neuroblastoma can develop anywhere along the sympathetic nerve chain, a series of nerves that control bodily functions like heart rate, breathing, blood pressure, and digestion. These nerves run along the length of the spinal cord and live in the adrenal glands, small organs above the kidneys in the abdomen. Symptoms of a neuroblastoma tumor can include:

• Swelling in the belly
• Swelling in the legs or face, especially if a large tumor slows the flow of blood back to the heart
• Belly pain or constipation
• Weight loss or loss of appetite
• Weakness in the legs or difficulty walking

Neuroblastoma tumors can make hormones that cause unique symptoms as well. Some of these include:

• Opsoclonus myoclonus syndrome, a condition that makes it difficult for a child to balance and see straight, often resulting in trouble walking and rapid eye twitching movements
• Severe diarrhea caused by a hormone called VIP, vasoactive intestinal peptide, created by tumor cells
• High blood pressure caused by increased levels of certain hormones called catecholamines

These symptoms can be due to other causes, but checking with a doctor is important for your child’s health.

How is neuroblastoma diagnosed?

Diagnosing neuroblastoma often involves imaging tests, blood and urine tests, as well as a biopsy of the tumor to confirm the diagnosis. If neuroblastoma is confirmed on biopsy, more detailed tests will be done on the biopsy sample to learn more about it. Tests such as imaging and a bone marrow biopsy will be done to find out if the neuroblastoma has spread. These test results help doctors learn more about the tumor and how best to treat it.

Some of these tests will also be used to help track how well treatment is working.

Stages, risk groups and outlook for neuroblastoma

After a neuroblastoma diagnosis, many people want to understand what to expect. Doctors use information about a tumor’s stage (extent), as well as other factors that can affect a child’s prognosis (outlook), such as their age and gene changes in the tumor cells to assign a risk group. Risk groups refer to how likely it is that the cancer might recur or come back after treatment. They are used to decide what treatment is best for each specific case.

Risk groups are important in estimating a child’s outlook (prognosis) for survival.

Survival rates are a way to measure how many people survive a certain type of cancer over time. Survival rates are often reported as 5-year survival rates, which refer to the percentage of children who live at least 5 years after their cancer diagnosis. Of course, many children live much longer than 5 years (and many are cured). Some people find this information helpful, while others prefer to focus more on treatment plans and next steps.