Treatment by risk group for neuroblastoma
Treatment for neuroblastoma depends on the risk group. This means if there is a low, medium or high risk of the cancer coming back after treatment.
We have detailed information on the risk groups.
Most children with neuroblastoma need to have treatment. They might have:
- surgery
- chemotherapy
- radiotherapy
- immunotherapy
- combination of two of the above, or all of them
Your child might also have treatment as part of a clinical trial.
Remember, this is just a guide. Your child’s specialist team will go through their treatment plan with you. Make sure you ask as many questions as you need to about what to expect.
Risk factor groups
Doctors use imaging tests such as CT scans, to look for particular risk factors. If your child has any of these risk factors it is a sign that it is more difficult to treat. For example they will look at whether the tumour is wrapped around an organ. These changes are called image defined risk factors.
Low risk
Babies with low risk neuroblastoma and no symptoms may not need much treatment. And some don't need any treatment at all. This is stage MS or L2 and the cancer cells have features that make them low risk (favourable tumour biology) and children have few, if any symptoms.
This kind of neuroblastoma can sometimes disappear on its own. Doctors always keep a close eye on children who have had neuroblastoma. They will have hospital appointments for some years.
Some children with low risk neuroblastoma (L2 or MS) need treatment. This is because:
- there are certain features of the cancer cells that make them higher risk (unfavourable tumour biology)
- they have symptoms
The treatments might be:
- surgery alone if it can be removed – this called L1 disease
-
chemotherapy and sometimes surgery. Your child might have surgery if the cancer is affecting organs of the body so they are not working properly or is life threatening. But it is much more likely that chemotherapy is used first. Or they have unfavourable tumour biology.
Intermediate risk
Children with intermediate risk neuroblastoma usually have chemotherapy and surgery. They might also need radiotherapy.
High risk
Treatment for high risk disease has 4 parts and lasts about 12 to 18 months. The 4 parts include:
Induction treatment
The first treatment children with high risk neuroblastoma have is chemotherapy. This is to either get rid of or reduce the cancer that has spread.
Local control treatment
The second part of treatment is an operation to remove the main tumour.
Consolidation treatment
This is the third treatment. It is high dose chemotherapy with a 
followed by radiotherapy.
Maintenance treatment
After consolidation treatment there is still a small chance the cancer could come back. This is because there could be neuroblastoma cells that haven’t been killed by the other treatments.
Doctors call this minimal residual disease or MRD. Left alone, they could develop into another tumour. Research has shown that having maintenance treatment can help reduce the chance of this happening.
A substance related to vitamin A is one of the maintenance treatments your child might have. It is called 13-cis-retinoic acid (isotretinoin). It works by making any remaining neuroblastoma cells grow up and become normal nerve cells. This also helps if you have immunotherapy treatment as you have more targets (GD2) for the immune system to attack.
Your child takes it as a capsule for about 6 months. The standard amount (dose) is twice a day for 2 weeks and then 2 weeks off before starting again. Some of the side effects include:
- skin changes such as a rash, itchy and dry skin and cracked lips
- dry eyes, they might also feel gritty, water and look red (conjunctivitis)
- low levels of platelets in your blood, this can make you bleed more easily
- looking pale and feeling weak and dizzy, due to low levels of red bloods cells (anaemia)
- muscle and joint pain
Immunotherapy
Immunotherapy uses your immune system to fight cancer. It works by helping the immune system recognise and attack cancer cells. This is also part of the maintenance treatment.
Dinutuximab beta is a type of immunotherapy called monoclonal antibody treatment. Neuroblastoma cells contain a substance called disialoganglioside 2 (GD2) on their cancer cells. Dinutuximab beta works by seeking out the GD2 substances and locking onto it. Once locked on it triggers the immune system to kill any cancer cells. The treatment is called anti GD2.
Research
Researchers are still looking into what the best treatment is for neuroblastoma. So, your child’s doctor might ask you if your child will take part in a trial to look into different treatments.
More information on treatment
We have more information on all the treatments. This includes the chemotherapy drugs your child might have for neuroblastoma and the possible side effects.
