Symptoms of neuroblastoma

The most common symptom of neuroblastoma is a lump in the tummy (abdomen). This could make your child’s tummy swell, causing discomfort or pain. Some children may even get constipation. 

Other symptoms depend on where the neuroblastoma starts in the body and whether it is just in one place (localised) or has spread to other parts of the body. 

Some of these symptoms might include:

• numbness
• weakness
• loss of movement in the lower part of the body
• breathlessness
• difficulty swallowing

Symptoms when neuroblastoma has spread

In around half of children, the neuroblastoma has spread to another part of the body at diagnosis. The symptoms depend on where it has spread to and how big it is. Bone pain is a common symptom in neuroblastoma that has spread. But you can also have symptoms that are vague such as:

• tiredness

• fever (high temperatures)

• loss of appetite

Bones

This is a common place for neuroblastoma to spread to. Symptoms include pain (sometimes with swelling over the bone) and difficulty in walking. Occasionally it can affect the bones of the spine causing:

• numbness

• weakness

• loss of movement in the lower part of the body

• weeing and pooing without control (incontinence)

Bone marrow

Bone marrow is the spongy substance in the centre of the bones. 

It contains early blood cells, called stem cells. These develop into the 3 different types of blood cell.

 Neuroblastoma that spreads to the bone marrow might cause:

• tiredness and paleness due to a low red blood cell count (anaemia)

• bruising or bleeding due to a low platelet count (sometimes around the eyes)

• infections due to a low white blood cell count

Skin

Neuroblastoma that spreads to the skin can give it a blueish red colour, as if it were bruised. The appearance might be different depending on your child’s skin tone. Sometimes, there are small, raised, discoloured lumps.  

Liver

Spread to the liver might cause tummy swelling and pain. Babies might also have difficulty feeding because the liver has got bigger.

Catecholamines

Catecholamines (cat - a - coal - ay - means) are chemical messengers that send messages between nerve cells. The adrenal glands make these, one example is adrenaline.

Our bodies break them down into substances that we pass out in our urine. Neuroblastoma tumours often produce catecholamines in large amounts. 

Your child’s doctor tests for this by looking at a blood or urine sample. It is very unusual for it to cause any symptoms. If the tumour produces very large amounts of catecholamines it can cause symptoms. These include:

• weight loss
• sweating
• redness of the skin (flushing) or paleness
• a fast heartbeat and increased blood pressure
• watery diarrhoea

Seeing your GP

You usually take you child to see a GP first. Having one of these symptoms doesn’t mean your child has neuroblastoma. They can be symptoms of other things. But you should get any changes checked out by their GP.

It can be hard for GPs to decide who may have cancer and who might have a more minor condition. For some symptoms, your doctor may ask you to wait to see if your child’s symptoms get better or respond to treatment, such as antibiotics.

Referral to a specialist

There are guidelines for GPs to help them decide who needs a referral to see a specialist or have tests. The GP will use these guidelines as well as their experience and judgement.

These guidelines vary slightly between the different UK nations.

England and Wales

Your GP should refer your child to see a specialist within 48 hours (2 days) if they have any of the following:

• a lump in the tummy (abdomen)

• an unexplained enlarged or swollen organ in the abdomen

Northern Ireland and Scotland

There are separate detailed guidelines for Northern Ireland and Scotland. If you live in these nations, your GP will use these to guide their decision. You can find these on the following websites. Please note these are intended for health professionals. Your GP can explain whether or not they are going to refer your child and why this is.

• Scottish Referral Guidelines for Suspected Cancer
• Northern Ireland Referral Guidance for Suspected Cancer - Reg Flag Criteria

The first professional your child might see is a specialist children’s doctor. These doctors are called paediatricians. They might then go on to see a specialist children and young person’s cancer doctor. These doctors are called consultant paediatric oncologists.

What happens next

Ask your GP what happens next. Make another appointment to see your GP if your child’s symptoms don't get better or you notice any new or unusual symptoms. 

Tests for neuroblastoma

Find out about the tests your child might have if their doctor suspects they have neuroblastoma.