An introduction to long-term follow-up after childhood cancer

An introduction to long-term follow-up after childhood cancer

About 2-5 years after cancer treatment has finished, your child or young person will transfer into long-term follow-up care. This has more focus on long-term problems that may be the result of the disease or treatment. Remember, many young people do not develop any long-term problems.

A young girl smiling and a group of teens smiling

Key points to remember about long-term follow-up after childhood cancer

Many young people do not develop any long-term problems.

  • some cancer treatments can cause health problems that may not happen until many years after treatment has finished
  • these health problems are often called 'late effects'
  • it is important to remember that many young people do not develop any long-term problems

The end of childhood cancer treatment

Once cancer treatment has finished, your child or young person will keep going to clinics. These will be at one of the following:

  • the centre where your child had their treatment
  • your local shared care centre

This page is written for parents and whānau.

Transferring into long-term follow-up care after childhood cancer

About 2 - 5 years after cancer treatment has finished, your child or young person will transfer into long-term follow-up care. This is often called the Late Effects Assessment Programme (LEAP). This clinic has more focus on long-term problems that may be the result of the disease or treatment. These problems are often called 'late effects'.

Long-term follow-up is different for everyone who has had cancer, or an illness that needed cancer-like treatment. It will depend on the type of cancer/illness and the treatment your child had. By going to clinic, the healthcare team can check for any late effects that your child may be at risk of developing. The healthcare team can either prevent or manage any problems that do occur.

It is important to remember that many young people do not develop any long-term problems.

What does long-term follow-up after childhood cancer look like?

There are 2 types of long-term follow-up clinics. Both provide the same key follow-up care:

  • LEAP team
  • joint LEAP/shared care

LEAP team

Your child will see the LEAP team in the following regions:

  • Auckland
  • Wellington
  • Christchurch and the remainder of the South Island

The LEAP team may include a paediatric oncologist, a nurse specialist and a clinical psychologist who is available if your child needs psychosocial support at any stage.

Joint LEAP/shared care

Your child will have long-term follow-up at your local shared care clinic, alternating between a visiting oncologist and your local paediatrician. Psychosocial support is also available if your child needs it.

For more information about late effects, check the websites listed under 'External links and downloads' below

Treatment summary after childhood cancer

When your child is in long-term follow-up, you will receive a copy of their treatment summary. This is sometimes called a 'health passport'. It has all the important details of your child's treatment. This is helpful for any health professional they might see in the future.

How long does your child need to be in long-term follow-up care after childhood cancer?

This is different for everyone and often depends on:

  • how old your child is
  • what treatment they had
  • whether they have any late effects that are causing health problems, learning problems or other concerns that affect their quality of life

Most young people will no longer need to go to a LEAP clinic once they are adults - somewhere between 18 and 21 years of age. Their family doctor and adult health care specialists will continue to see them if necessary.

LEAP team contacts 

Auckland

LEAP@adhb.govt.nz
LEAP Coordinator, Long-Term Follow-up Programme
Starship Blood and Cancer Centre
Starship Children's Health
Private Bag 92024
Auckland 1142

Wellington

LEAP@ccdhb.org.nz
LEAP Coordinator, Late Effects
Paediatric Oncology
Capital and Coast District
Health Board
Private Bag 7902
Riddiford Street, Newtown
Wellington 6021

Christchurch and South Island

LEAP@cdhb.health.nz
LEAP Coordinator
Children's Oncology Late Effects
Dept. of Paediatrics
Christchurch Hospital
Private Bag 4710
Christchurch

All the pages in the childhood cancer section of this website have been written by health professionals who work in the field of paediatric oncology. They have been reviewed by the members of the National Child Cancer Network (NZ). Medical information is authorised by the clinical leader of the National Child Cancer Network.

This page last reviewed 29 November 2018.
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