Doctors plan your child’s treatment in one of the major children’s cancer centres. And your child has most of their treatment in this specialist centre, but they might have some care at a hospital closer to home.
Children's cancer centres have teams of specialists who know about neuroblastoma and the best way to treat them.
The main treatments include:
Decisions about treatment
The specialist team plan treatment based on several factors, including your child’s age.
A pathologist (an expert who examines and identifies cells) looks at the neuroblastoma cells under a microscope. This helps the team decide on the risk group. This means if there is a low, medium or high risk of the cancer coming back after treatment.
Your child's treatment depends on this risk group.
How long does treatment last?
How long treatment goes on for depends on the stage of the tumour and the risk of the neuroblastoma coming back after treatment. Because of this, treatment plans look very different from child to child. To get the best information, ask your child’s doctor how long they expect your child to be having treatment for. They can break it down into stages for you.
You can get an overview of the common treatments on this page.
Your child’s surgeon tries to remove the whole tumour, or as much of it as possible. The exact type of surgery depends on where the tumour is in the body.
When your child might have surgery
Most children with neuroblastoma have surgery at some point during their treatment. For tumours that haven't spread, and it’s possible to remove it all, surgery might be the only treatment your child needs.
Your child might have chemotherapy first to shrink the tumour down to a smaller size. The aim of this is to make the operation easier and safer. Your child stays in hospital after their surgery. How long, depends on the type of surgery they have, but this might be for around 7-10 days.
Straight after their operation, your child might be looked after on an intensive care or high dependency unit. Most of the children have one to one nursing care here. They can be quite busy and noisy places, but allow your child to be monitored carefully by the nursing and surgical team. As soon as your child’s doctors are sure they are recovering well, they move back to the children’s ward.
Your surgeon talks with you about the risks and benefits of neuroblastoma surgery. The main side effects include:
Other possible side effects depend on where the neuroblastoma is in the body.
Chemotherapy uses drugs to kill cancer cells.
Children with intermediate or high risk neuroblastoma have chemotherapy.
Less commonly, children with low risk neuroblastoma also have chemotherapy. This might be because their symptoms are causing particular problems, such as with their liver. Or the tumour might be making breathing difficult.
Doctors usually give a combination of chemotherapy drugs, usually 2 or more different ones.
Chemotherapy drugs your child might have for neuroblastoma include:
Your child will have a central line put in before they start treatment. This is a tube that is put into one of the large veins in the chest. They can have their chemotherapy drugs through the central line and doctors can take blood from it. It means that they need fewer needles. A central line is kept in place throughout treatment.
We have more information on the different types of central lines which is written for adults with cancer. But the pictures and more in depth information might be helpful to look at.
Your doctor will talk with you and your family about the risks and benefits of chemotherapy for neuroblastoma. The side effects depend on the drugs your child is having. Not everyone gets bad side effects from chemotherapy drugs. And the team looking after your child are very experienced in managing the side effects of chemotherapy.
Chemotherapy damages dividing cells. Cancer cells divide much more often than most normal cells. So, chemotherapy damages cancer cells and can destroy them. But some types of normal cells divide very often too. This happens in tissues that need a steady supply of new cells, such as:
- the skin
Chemotherapy can also damage those cells, and this causes side effects. But the damaged normal tissues can repair themselves and recover.
The main side effects of chemotherapy include:
- tiredness and weakness
- an increased risk of getting an infection
- a sore mouth
- hair thinning or hair loss
- feeling or being sick
- breathlessness and looking pale
- constipation or diarrhoea
Some children need more intensive or high dose chemotherapy. High doses of chemotherapy can damage the bone marrow and kill off the cells that make blood cells. These cells are called stem cells. So, as part of this high dose treatment they have treatment to replace these blood stem cells.
When your child might have a stem cell transplant
Your child might have high dose chemotherapy and a stem cell transplant if they have high risk neuroblastoma.
Early on in the treatment, doctors collect some blood stem cells and store them until after your child has had the high dose chemotherapy.
Then, after the high dose treatment, the stem cells are given by a drip back into the body.
The side effects of the stem cell transplant are caused by high dose chemotherapy and can be quite severe. But, the team caring for your child are experts in managing these side effects. They do everything they can to prevent, or support your child through, any problems.
The main side effects of this type of intensive treatment include:
- an increased risk of getting an infection
- an increased risk of bruising or bleeding from low blood cell counts
- sickness and diarrhoea
- a sore mouth
- difficulty eating and drinking
- feeling tired and run down
There are longer term side effects of having intensive chemotherapy. Your team will talk these through with you. You have time to ask any questions you might have.
Radiotherapy uses high energy x-rays to kill cancer cells.
When your child might have radiotherapy
Your child might have radiotherapy after surgery to reduce the risk of the cancer coming back. They are likely to have radiotherapy if they have intermediate or high risk neuroblastoma.
Less commonly children with low risk neuroblastoma have radiotherapy. But this is only if their symptoms are causing them a lot of problems, for example making breathing difficult.
Radiotherapy is usually aimed at the cancer from outside the body. This is called external beam radiotherapy.
Your child has treatment in the radiotherapy department. Radiotherapy machines are very big and they vary slightly in how they look and how they work. Your child lies on a couch and the treatment is given by the machine. The machine doesn't touch your child and they don’t feel anything during treatment.
Play specialists are often available to help your child get used to having radiotherapy. The team at your hospital are used to treating children with cancer and will explain everything clearly to you, and to your child.
Your child might need targeted or molecular radiotherapy if their neuroblastoma is high risk. This might be:
- before a stem cell transplant
- because chemotherapy is not working
- if the neuroblastoma has come back after earlier treatment
Molecular radiotherapy is similar to the mIBG scan used to diagnose neuroblastoma, but it gives a higher dose of radioactive iodine. Neuroblastoma cells absorb a substance called mIBG.
The mIBG is picked up by the cancer cells. The dose of radioactive iodine attached to the mIBG is high enough to kill the neuroblastoma cells, but not to cause serious side effects to surrounding tissues. But, this treatment can damage the bone marrow and kill off the cells that make blood cells. So children having this treatment might also need a stem cell transplant.
Children having mIBG treatment need to be cared for on their own because of the radioactive iodine. It’s normal to feel a bit nervous about this at first. The specialist team lets you know what to expect and how best you and your family might cope.
Monoclonal antibody treatment is a type of immunotherapy. Monoclonal antibodies are manmade versions of proteins that our immune system makes.
Some monoclonal antibodies can recognise and attach to specific proteins on neuroblastoma cells. This can help the immune system recognise the neuroblastoma cells and kill them.
The monoclonal antibody treatment used for neuroblastoma is called anti GD2. Researchers have been testing a type called dinutuximab beta.
The National Institute for Health and Care Excellence (NICE) guidelines say that children in England over the age of 12 months, who have had some response to chemotherapy followed by high dose treatment and a stem cell transplant, can have the immunotherapy drug dintuximab beta.
NICE say that it is for children who:
- have a high risk of their cancer coming back
- have not already had anti GD2 immunotherapy
The Scottish Medicines Consortium (SMC) will be making a decision about dinutuximab beta soon. The All Wales Medicines Strategy Group (AWMSG) will follow the NICE decision.
How your child has anti GD2 treatment
Your child has the immunotherapy by injection into the blood stream. Most children have it through their central line. They usually have treatment for about 16 weeks (about 4 months).
Side effects of anti GD2 treatment
The main side effects of anti GD2 include:
- low blood pressure
- fast heartbeat
These side effects happen either because of movement of fluid in the body or because of an allergic reaction. The nurses will keep a close eye on your child while they are having treatment.
To help the immune system work your child might also have injections of blood cell growth factors to produce more cells to attack the neuroblastoma cells.
There is research going on to try and improve treatment for children with high risk neuroblastoma. This includes how to prevent or manage side effects of treatment. So, your specialist team might ask you to consider treatment as part of a clinical trial.
CAR T-cell treatment
There is an experimental type of immunotherapy that uses cells from the child's immune system. The cells are changed in a laboratory and are called CAR T-cells. Researchers are looking at CAR T-cells in clinical trials, to see if they can help children with neuroblastoma.
Treatment by risk group
We also have more detailed information about the common treatments for each risk group.
Neuroblastoma that has come back
Neuroblastoma that does not go away with treatment is called refractory neuroblastoma. Neuroblastoma that comes back after treatment is called recurrent (or relapsed) disease.
The treatment your child needs depends on a number of factors including where it has come back and the original risk group they were in.
Follow up appointments
After treatment, your child has regular follow up appointments. They continue for at least 5 years. These appointments are to check:
- how they are recovering
- their development
- if they are having any problems following treatment
- if there are any signs of the neuroblastoma coming back