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40% of all cancers spread to the brain

What is Neuroblastoma?

Neuroblastoma is a rare cancer that develops from immature nerve cells called neuroblasts. It primarily affects infants and young children, with the majority of cases diagnosed in children under the age of 5. Around 100 children between 0 and 14 are diagnosed with neuroblastoma each year in the UK. Very rarely it can develop in older children, teenagers and adults.  

Neuroblastoma can occur anywhere in the body, but often starts in the adrenal glands, which are located on top of the kidneys. The cancer can also develop in other parts of the body where nerve tissue is present, such as the neck, chest, or spinal cord. 

Neuroblastoma is the most common form of embryonal tumour. Embryonal tumours are formed from tissue that is normally only seen in the developing embryo. The exact cause of neuroblastoma is not well understood. 

What are the symptoms?

Symptoms of neuroblastoma can vary depending on the location and size of the tumour, as well as if it has spread to other parts of the body. Some children with neuroblastoma may not show any obvious symptoms initially, while others may experience a variety of signs.  

Common symptoms can include, but are not limited to:

  • A visible lump or mass, often in the abdomen
  • Tiredness
  • Loss of appetite and weight loss
  • Bone pain or limping
  • Weakness in the legs
  • Swelling, especially in the legs or abdomen
  • Difficulty breathing or swallowing
  • Small bluish-purple skin nodules (called "blueberry muffin spots ")

What is the prognosis?

The prognosis for neuroblastoma varies depending on several factors, including the stage of the disease, the age of the patient, and the specific characteristics of the tumour. In general, those who were diagnosed under 12 months of age and those with lower-stage disease have better survival rates. Girls also tend to have a better outlook than boys.

70% of children (aged 0-14) in the UK diagnosed with neuroblastoma and other peripheral nervous cell tumours survive five years or more (2012-2016).

It's important to note that these statistics are based on data from large groups of patients and may not be reflective of an individual's specific prognosis. Survival rates can also change as new treatments become available and as researchers continue to learn more about the disease. 

What are the stages for neuroblastoma?

Staging is a measure of how far the tumour has spread beyond its original site, and can help determine the correct treatment. The following describes the staging system that is used in the UK.

Stage 1: The tumour is in one location and can be removed completely with surgery.

Stage 2A: The tumour is in one location but cannot be completely removed by surgery.

Stage 2B: The tumour is localised but has spread to local lymph nodes.

Stage 3: The tumour cannot be removed fully by surgery and it is present on both sides of the body (either side of spine), or the tumour is present on one side of the body and cancer cells are found in lymph nodes on the other.  

Stage 4: The tumour has spread to distant lymph nodes, bone marrow, bone, liver and/or other organs.

Stage 4S: The tumour is localised (stage I, IIA or IIB), with spread limited to liver, skin and/or bone marrow in an infant under one year of age. 4S is unique compared to the other stages as it has much better outlook, children with 4S generally get better with very little, or no treatment. 

What is the treatment for neuroblastoma?

The treatment of neuroblastoma depends on the age of the child, the size and position of the tumour, the tumour biology and whether it has spread. It is a decision that will be made on an individual basis with the child’s treatment team.

The main treatments include surgery, chemotherapy, radiotherapy and immunotherapy (currently available in clinical trials only).

Please note:

Symptoms and prognosis will be different from person to person and a thorough evaluation by a healthcare professional is necessary for an accurate diagnosis. If you suspect that your child may have neuroblastoma or any other health concern, it is crucial to consult a paediatrician or medical specialist for an appropriate evaluation and diagnosis.


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