Treatments for neuroblastoma

Some babies under 3 months old with neuroblastoma do not need any treatment. The tumour goes away by itself. This is called regression. These tumours are very low risk. Your child has regular check ups to make sure the tumour is getting smaller. This is called monitoring.

Some other children under 18 months may also be able to have monitoring. They may have a tumour that can’t be removed with surgery. Or it has spread to other areas of the body – but not to the lung, bone or ​central nervous system (CNS)​. The cancer also has features that mean it is unlikely to grow or affect how well organs work. Doctors call this favourable biology.

It can seem very worrying when you first hear that your child won’t be having treatment. But your child’s doctor and nurse will talk you through why this is the best option for your child at the time.

Your child’s doctor usually sees them every 6 weeks for the first few visits. The time between visits then gradually increases as the tumour gets smaller.

As part of the check up your child will usually have a:

• physical examination by the doctor

• scan - this might be an MRI, CT or ultrasound scan

• urine sample to check for a substance called catecholamines. Neuroblastoma cells make these and the body gets rid of them through urine

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. Surgery might be the only treatment your child needs if the cancer hasn't spread and it's possible to remove it all. 

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 to 10 days.

After their operation, your child is usually looked after on an intensive care or high dependency unit. Most of the children have one to one nursing care here. These units can be quite busy and noisy places. But they allow your child to be carefully monitored 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.

Side effects

Your surgeon talks with you about the risks and benefits of neuroblastoma surgery. The main side effects include:

• infection

• bleeding

• pain

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. Or certain features in the cancer cells (the tumour biology) means it is more likely to come back.

What happens

Doctors usually give a combination of chemotherapy drugs, usually 2 or more different ones.

For low and intermediate risk neuroblastoma, children most commonly have:

• carboplatin

• etoposide

Sometimes this group of children might also have the CADO regimen which contains:

• cyclophosphamide

• vincristine

• doxorubicin

For high risk neuroblastoma, children usually have all of the following:

• carboplatin

• etoposide

• cyclophosphamide

• vincristine

• busulphan

• melphalan

• cisplatin

Children with high risk neuroblastoma may have additional chemotherapy drugs if they are taking part in a clinical trial. This includes chemotherapy drugs such as:

• ifosfamide

• vindesine

• thiotepa

• darcarbazine

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.

Read more about central lines

Side effects

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

• hair

• nails

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

Get more information on individual chemotherapy drugs, including possible side effects

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.

What happens

Early on in the treatment, doctors collect some of your child's stem cells. They are then stored until after they have had their high dose chemotherapy.

After the high dose treatment, your child has the stem cells through a drip back into the body.

Side effects

The high dose chemotherapy your child has before the stem cells causes the side effects. These side effects 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 means the use of radiation, usually x-rays to kill cancer cells. 

When your child might have radiotherapy

Your child might have radiotherapy after surgery. This is 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, if the tumour is making breathing difficult.

What happens

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 machine gives the treatment. 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. They will explain everything clearly to you, and to your child.

Molecular radiotherapy

Molecular radiotherapy is also called targeted radiotherapy. Your child might need molecular radiotherapy if their neuroblastoma is high risk. This is a type of internal radiotherapy. They might have it:

• 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 that your child had at diagnosis. The main difference being that your child gets a higher dose of radioactive iodine.

Find out more about having a mIBG test

mIBG is a drug that the doctors use to treat neuroblastoma. Radioactive iodine is attached to the mIBG. They have it through a vein into the bloodstream (intravenously).

The mIBG travels around the body and is picked up by the cancer cells. The amount of radioactive iodine attached to the mIBG is high enough to kill the cancer cells. But it is not too high to cause serious side effects to surrounding tissues

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.

As it’s a type of internal radiotherapy, any child having mIBG treatment needs to be cared for on their own. This is because any of their bodily fluids such as their urine and saliva will contain radiation.  

It’s normal to feel a bit nervous about this at first. The specialist team caring for your child are used to looking after children who need to isolate. So they will let 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.

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.

Your child might have dinutuximab beta if they:

• are 12 months old and over

• have had some response to chemotherapy and

• they have had high dose treatment and a stem cell transplant

They also say that it is for children who:

• have a high risk of their cancer coming back

• have not already had anti GD2 immunotherapy

How your child has anti GD2 treatment

Your child has the immunotherapy by injection into the bloodstream. Most children have it through their central line. They usually have treatment for about 16 weeks (about 4 months).