Follow up and late effects of childhood acute lymphoblastic leukaemia (ALL)

Your child will see their specialist doctors in clinic for at least 2 to 3 years after they have finished treatment for childhood leukaemia. After that, your child is likely to be seen in a late effects clinic. Here, they might see a doctor or an advanced nurse practitioner.

At the moment, people who have had cancer in childhood have lifelong follow up. Researchers are interested in finding out if everyone needs this level of care after childhood cancer.

At first, they are usually seen every 1 to 2 months. And if they are recovering well it becomes less frequent. At 5 years they are seen once a year. These appointments are important. Your child’s doctor is looking for:

• any signs or symptoms of the leukaemia coming back
• how they are growing and developing
• how your child is getting on psychologically and socially after their treatment for leukaemia
• any other problems or side effects of treatment

Together you, your child, and the treatment team can plan the best way to manage any problems if they come up.

End of treatment summary and care plan

Children and young people who have had treatment for cancer should have a care plan at the end of treatment. This plan should include:

• their diagnosis
• all the treatment they have had
• possible problems they might have
• future appointments that have been arranged
• how any future problems should be checked out
• who to contact with any problems

Long term side effects

Many parents worry about the possible long term effects of treatment. Some children treated for leukaemia in childhood 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
• the treatment amount (dose) they had
• the age they were when they had treatment

It’s impossible to predict who will get long term side effects at the moment.

It is important to remember that the risk needs to be weighed up against the benefits of treatment. More children are surviving childhood leukaemia as treatments have improved over the last 30 years. And the risk of long term effects is also becoming less as childhood cancer treatment schedules have changed.

Possible long term late effects

Possible long term side effects include:

• fertility  problems after a bone marrow or stem cell transplant
• bone problems
• changes in how the kidneys and heart work
• growth problems
• 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 when needed.

Transition

Some families worry about their child moving from children’s services into the adult late effects service. They are sometimes concerned that the team don’t know their child well, or that adult services are busier and professionals have less time. And, it can be difficult to know you're going to be less directly involved in your child’s care at this point.

‘Transition’ means this move, from children’s to adult care. Health professionals know how important this move is and there has been lots of work done in cancer services to make this move easier for everyone. Some hospitals have transition clinics to help make this as smooth as possible. It allows your older child to know what to expect and ask any questions they have.