Long-term follow-up in childhood cancer

Long-term follow-up in childhood cancer

Some cancer treatments can cause health problems that may not happen until many years after the end of treatment. These health problems are often called 'late effects'. 

Key points to remember

This page is part of a whole section about childhood cancer.

  • 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'
  • after the end of treatment, your child's cancer doctor (oncologist) will continue to check your child at the hospital outpatient clinic

The end of treatment

Long-term follow-up clinics at the centres where children receive treatment are part of Children's Cancer Services in New Zealand.

After the end of treatment, your child's cancer doctor (oncologist) will continue to check your child at the hospital outpatient clinic.

At some time over the next 2 to 4 years, the cancer doctor will discuss transferring your child into the Late Effects Assessment Programme (LEAP). The reason for this is to keep monitoring your child for any late effects of cancer treatment.

The Late Effects Assessment Programme (LEAP)

What are late effects?

Some cancer treatments can cause health problems that may not happen until many years after the end of treatment. These health problems are often called 'late effects'. They can vary in seriousness and complexity so management and treatment vary as well.

Late effects may be physical, emotional, social or educational. They may happen as a result of chemotherapy, radiotherapy, surgery or stem cell transplantation. The age at diagnosis, genetic make-up, treatment complications as well as the original disease can also affect the development of late effects.

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

The LEAP team 

The LEAP team at the long-term follow-up clinic includes:

  • a children's cancer doctor (paediatric oncologist)
  • a nurse specialist
  • a psychologist

When your child is ready to start long-term follow-up, they will receive a 'health passport'. This is a summary of your child's treatment.

Each time you go to see the LEAP team, your child will have a full health check, as well as education and information on health risks they may have or may be at risk of developing in the future.

Check that you have the names and phone numbers of the nurse specialist, cancer doctor (oncologist) and psychologist at your child's long-term follow-up clinic. 

If you feel you don't have enough information, ask the cancer doctor and nurse at the long-term follow-up clinic to discuss your child's individual risks with you again.

Common late effects

Growth

Some treatment, especially radiotherapy to the brain and/or spine, can slow growth. Height measurements each year help predict if there is a problem. Your child's cancer doctor may recommend specialised tests and treatments if this late effect is developing.

Heart

A small number of children who have had either of the following treatment may have problems with their hearts:

  • radiotherapy to the chest
  • chemotherapy medicines called anthracyclines such as Doxorubicin or Daunomycin

This is more common in children who have had higher doses of these medicines and who have had treatment before their hearts are fully grown.

Thyroid

The thyroid gland helps regulate growth and weight and it also produces certain hormones. Brain tumours and radiotherapy to the head or neck can sometimes cause the thyroid gland to work incorrectly. A blood test can check that the thyroid gland is working properly. If the test results show that the thyroid gland isn't working properly, your child can take medicine (by mouth) to treat this. 

Fertility

Some chemotherapy medicines and radiation therapy to the area of the pelvis can affect sexual development. This soemtimes causes late puberty, early menopause and/or infertility (the inability to have children). Monitoring, which includes blood tests, can help reveal any problems developing. Specialised tests and treatments are available and your doctor may recommend these.

Second cancers

Radiation therapy and some chemotherapy medicines can increase the risk of developing a second cancer. This is a different cancer, not a relapse. Some survivors may have genetic changes that put them more at risk of developing a second cancer. Smoking and excessive exposure to the sun can also increase the risk of developing a second cancer.

School, education and work

The original disease, some chemotherapy medicines and/or radiation therapy to the brain may cause learning difficulties, and/or socialising difficulties for some children. Your child can have psychological testing if necessary. This can identify areas of concern. Support and management strategies can help overcome problems.

Health passport

A 'health passport' is a treatment summary for all children going to a long-term follow-up clinic. The passport has the following information for each child:

  • name of the disease, date of diagnosis and stage of the disease
  • name of the study or treatment plans (protocols) 
  • date treatment finished
  • the treatment your child had, including all chemotherapy medicines and dosages
  • types and dates of surgery
  • radiotherapy, dosage and area of the body receiving treatment
  • names and dates of any significant complications during treatment
  • information sheets on any late effects that could develop based on knowledge of the disease, chemotherapy or radiation therapy received Thumbnail image of book cover - childhood cancer survivors

Further reading

Keene N, Hobbie W, Ruccione K. 2012. Childhood cancer survivors. A practical guide to your future. USA: Patient Center Guides.

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 27 February 2013.
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