What is neuroblastoma?
Neuroblastoma is a cancerous tumor. It grows in nerve tissue of babies and young children. The cancer cells grow in young nerve cells of a baby growing in the womb. These cells are called neuroblasts. It’s is the most common cancer in babies under age 1. It’s rare in children older than age 10.
- Nerve fibers along the spinal cord
- Clusters of nerve cells (ganglia) along the nerve fibers
- Nerve-like cells in the adrenal glands
In most cases, neuroblastoma starts in the adrenal glands or the nerve fibers in the abdomen. Other common places for it to grow include the nerve fibers near the spine in the chest, neck, or lower belly (pelvis).
What causes neuroblastoma in children?The cancer is caused by changes in the DNA of the cells. In most children, this happens by chance. A small number of children inherit the risk from their parents.
What are the symptoms of neuroblastoma in children?
The symptoms vary depending on the size and location of the tumor and if it has spread. Symptoms can also occur a bit differently in each child.
Symptoms of a tumor in the belly (abdomen) can include:
- A lump in the abdomen
- Swelling in the abdomen
- Loss of appetite
- Weight loss
- Swelling of the legs
- Swelling of the scrotum
- Feeling full
Symptoms of a tumor in the chest can include:
- A lump in the chest
- Swelling in the face, neck, arms, or chest
- A change in mental state
- Coughing or trouble breathing
- Trouble swallowing
- Drooping eye lids and other eye changes
- Changes in feeling or movement of the arms or legs
Symptoms of a neuroblastoma that has spread to other parts of the body can include:
- Enlarged lymph nodes
- Bone pain or limping
- Weakness, numbness, or inability to move arms or legs
- Bruising around the eyes
- Bulging eyes
- Lumps on the head
- Feeling tired or weak
- Frequent infections
- Easy bruising or bleeding
A neuroblastoma may release hormones. This is called paraneoplastic syndrome. It can cause symptoms such as:
- Constant diarrhea
- High blood pressure
- Fast heart rate
- Flushing or redness of skin
A neuroblastoma can also cause opsoclonus-myoclonus-ataxia syndrome. This can lead to symptoms such as:
- Quick eye movements
- Muscle twitching
- Trouble with coordination
The symptoms of neuroblastoma can be like other health conditions. Make sure your child sees a healthcare provider for a diagnosis.
How is neuroblastoma in children diagnosed?
You may take your child to the healthcare provider because of a lump, swelling, or other symptoms. Most of the time, neuroblastoma has spread by the time it is diagnosed. Your child's healthcare provider will ask about your child's medical history and symptoms. He or she will examine your child. Your child may be referred to a specialist in diagnosing and treating cancer in children (pediatric oncologist).Your child may have tests such as:
- Blood and urine tests. Blood tests check for signs of disease in the body. Your child may also have urine and blood tests to check for hormones released by the tumor.
- Ultrasound exam (US). Sound waves and a computer are used to create images. An ultrasound may be done to check your child's belly (abdomen), kidneys, or to guide a needle in a biopsy
- X-ray. X-rays may be done to check your child's chest or bones
- CT scan. X-rays and a computer are used to make images of the body. Scans of the belly (abdomen), lower belly (pelvis), or chest may be done. Contrast dye may be used. A CT scan may also be used to guide the needle in a biopsy.
- MRI scan. An MRI uses large magnets, radio waves, and a computer to make detailed pictures of the body. This test is used to check the brain and spinal cord.
- Bone scans. A small amount of dye is injected into a vein. The whole body is scanned. The dye shows up in areas of bone where there may be cancer.
- Positron emission tomography (PET) scan. For this test, a radioactive sugar is injected into the bloodstream. Cancer cells use more sugar than normal cells, so the sugar will collect in cancer cells. A special camera is used to see where the radioactive sugar is in the body. A PET scan can sometimes spot cancer cells in different areas of the body, even when they can’t be seen by other tests. This test is often used in combination with a CT scan. This is called a PET/CT scan.
- Metaiodobenzylguanidine (MIBG) scan. A small amount of radioactive iodine called MIBG is injected into a vein. The dye travels through the blood and attaches to cancer cells. Scans may be taken over a few days.
- Bone marrow aspiration or biopsy. Bone marrow is found in the center of some bones. It’s where blood cells are made. A small amount of bone marrow fluid may be taken. This is called aspiration. Or solid bone marrow tissue may be taken. This is called a core biopsy. Bone marrow is usually taken from the hip bone. This test may be done to see if cancer cells have reached the bone marrow.
- Tumor biopsy. A sample of the tumor is taken. It may be taken with a needle or by a surgical cut (incision). It is checked under a microscope for cancer cells. A biopsy is needed to diagnose neuroblastoma.
Part of diagnosing cancer is called staging. Staging is the process of seeing if the cancer has spread, and where it has spread. Staging also helps to decide the treatment. There are different ways of staging used for neuroblastoma. Talk with your child's healthcare provider about the stage of your child's cancer. One method of staging neuroblastoma is the following:
- Stage 1. The tumor is on one side of the body. It has not spread. It is able to be removed by surgery (resectable).
- Stage 2A. The tumor is on one side of the body. It has not spread. It can’t be fully removed by surgery.
- Stage 2B. The tumor is on one side of the body. Lymph nodes on that side of the body have cancer cells. It may or may not be able to be fully removed by surgery
- Stage 3. The tumor affects both sides of the body. It may have spread to nearby lymph nodes. Or it’s on one side of the body, but lymph nodes nearby or on the other side of the body have cancer cells. Or it is in the middle of the body and can’t be fully removed by surgery.
- Stage 4. The tumor has spread (metastasized) to distant lymph nodes, bone marrow, liver, skin, or other organs (except as defined in stage 4S).
- Stage 4S ("special" neuroblastoma). This stage is for a child younger than 12 months. This tumor is on one side of the body. It may have spread to lymph nodes on that side of the body, but not the other side. It has spread to the liver, skin, or bone marrow.
How is neuroblastoma in children treated?
Treatment will depend on the stage and other factors. The cancer can be treated with any of the below:
- Surgery. Surgery is often done to remove as much of the tumor as possible (resection). Surgery may not be possible if the cancer has spread too far.
- Chemotherapy. These are medicines that kill cancer cells or stop them from growing. They may be given into the vein (IV), injected into tissue, or taken by mouth. They may be given before or after surgery. Or they may be the main treatment if surgery is not possible. The medicine is given in cycles, with rest periods in between.
- Radiation therapy. These are high-energy X-rays or other types of radiation. They are used to kill cancer cells or stop them from growing. Radiation may be outside of the body (external) or inside the body (internal). Radioactive iodine (MIBG) is given into a vein (IV). Your child will stay in the hospital for this treatment.
- High-dose chemotherapy/radiation with a stem cell transplant. Young blood cells (stem cells) are taken from the child or from someone else. This is followed by a large amount of chemotherapy medicine and/or radiation. This causes damage to the bone marrow. After the chemotherapy and/or radiation, the stem cells are replaced.
- Immunotherapy. This treatment helps the body's immune system attack cancer cells. It is also used when there is a high risk of cancer returning.
- Retinoid therapy. Retinoid medicine may be given after high-dose chemotherapy/radiation and stem cell transplant. It may be used when there is a high risk of cancer returning.
- Supportive care. Treatment can cause side effects. Medicines and other treatments can be used for pain, fever, infection, and nausea and vomiting.
- Clinical trials. Ask your child's healthcare provider if there are any treatments being tested that may work well for your child.
With any cancer, how well a child is expected to recover (prognosis) varies. Keep in mind:
- Getting medical treatment right away is important for the best prognosis.
- Ongoing follow-up care during and after treatment is needed.
- New treatments are being tested to improve outcome and to lessen side effects.
What are possible complications of neuroblastoma in children?
A child may have complications from the tumor or from treatment, such as:
- Bleeding or infection after surgery
- Hair loss, mouth sores, nausea, vomiting, diarrhea, increased infections, easy bruising and bleeding, and feeling tired from chemotherapy
- Burns, hair loss, and feeling tired from radiation
- Nausea and diarrhea from radiation to the belly (abdomen)
- Problems with growth and development
- Heart and lung problems
- Changes in sexual development
- Problems with the ability to have children (fertility) in the future
- Return of the cancer
- Growth of other cancers
- A high risk of serious bleeding (consumption coagulopathy) (rare)
How is neuroblastoma in children managed?
A child with a neuroblastoma needs ongoing care. Your child will be seen by oncologists and other healthcare providers to treat any late effects of treatment and to watch for signs or symptoms of the tumor returning. Your child will be checked with imaging tests and other tests. And your child may see other healthcare providers for problems from the tumor or from treatment. Your child may need therapy to help with movement and muscle strength. This may be done by physical and occupational therapists.
You can help your child manage his or her treatment in many ways. For example:
- Your child may have trouble eating. A dietitian may be able to help.
- Your child may be very tired. He or she will need to balance rest and activity. Encourage your child to get some exercise. This is good for overall health. And it may help to lessen tiredness.
- If your child smokes, help him or her quit. If your child doesn’t smoke, make sure he or she knows the danger of smoking.
- Get emotional support for your child. Find a counselor or child support group can help.
- Make sure your child attends all follow-up appointments.
When should I call my child’s healthcare provider?
Call the healthcare provider if your child has:
- Symptoms that get worse
- New symptoms
- Side effects from treatment
Key points about neuroblastoma in children
- Neuroblastoma is a cancerous (malignant) tumor that begins in nerve tissue of infants and very young children.
- The symptoms of neuroblastoma vary greatly depending on size, location of the tumor and whether it has spread. Common symptoms are a lump or swelling.
- Neuroblastoma is diagnosed with blood and urine tests, imaging tests, and biopsy.
- Treatment of neuroblastoma may include surgery, chemotherapy, radiation therapy, high-dose chemotherapy/radiation with stem cell transplant, and other medicines.
- Continuous follow-up care during and after treatment is necessary
Next stepsTips to help you get the most from a visit to your child’s healthcare provider:
- Before your visit, write down questions you want answered.
- At the visit, write down the names of new medicines, treatments, or tests, and any new instructions your provider gives you for your child.
- If your child has a follow-up appointment, write down the date, time, and purpose for that visit.
- Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.