Living with Neuroblastoma
A cancer of immature nerve cells that most often affects children, usually starting in the adrenal gland.
Understanding Neuroblastoma
The tumor most often starts in nerve tissue of the adrenal gland above each kidney. It can also start in nerve tissue of the belly, chest, neck, or pelvis. It can spread to the bones, liver, or skin. More specific symptoms depend on where the tumor is and where it has spread.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Swollen belly or belly mass
- Tiredness (fatigue)
- Fever
- Weight loss
- Low red blood cells (anemia)
- Swollen lymph nodes
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Alex's Lemonade Stand Foundation and Children's Neuroblastoma Cancer Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Alex's Lemonade Stand Foundation, Children's Neuroblastoma Cancer Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Alex's Lemonade Stand Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a specific cause for this condition. It occurs when immature nerve cells called neuroblasts become abnormal and multiply uncontrollably.
Also known as: cancer of early nerve cells; nb; nb - neuroblastoma; neural crest tumor, malignant; neuroblastoma (schwannian stroma-poor); neuroblastoma, malignant
Patient organizations
- Alex's Lemonade Stand FoundationNeuroblastoma · United States
- Children's Neuroblastoma Cancer FoundationNeuroblastoma · United States
- American Cancer SocietyNeuroblastoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Neuroblastoma.
Explore research for Neuroblastoma
Explore actively recruiting Neuroblastoma studies with HealthSpark.
Find actively recruiting studies for Neuroblastoma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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