Long term side effects of treatment for neuroblastoma

Many parents worry about the possible long term effects of treatment. Some children treated for neuroblastoma go on to develop long term side effects. But not everyone has them. The possible long term effects depend on the:

• type of treatment the child has had

• treatment amounts (doses) they had

• age they were when they had treatment

In particular, children with high risk neuroblastoma often have a range of different treatments. Each with their own possible side effects. It’s impossible to predict who will get long term side effects at the moment.

It is important to remember that the risk of treatment needs to be weighed up against the benefits of treatment. More children are surviving neuroblastoma as treatments have improved over the last 20 years. And the risk of long term effects is also becoming less as childhood cancer treatments become kinder with research.

Possible long term late effects

Some of the possible long term effects include:

• not being able to have children in the future (fertility problems)
• hearing problems
• lung problems
• changes in how the kidneys and heart work
• problems with the glands that create hormones (endocrine system). This can cause problems such as growth and development issues, thyroid issues, period changes, and diabetes
• a risk of developing a second cancer

Your child’s doctor will talk to you about the possible risks depending on the treatment your child has had. They will continue to keep a close eye on your child, so that any problems can be treated early. They will work out the best way to follow them up depending on the treatment they have had. 

Late effects clinic

Children who have had cancer should have follow up into adulthood.

Long term follow up clinics are available for those who are 5 years or more from the end of their cancer treatment. Your child usually sees a specialist nurse. The specialist nurse can make referrals to other professionals if they need to.