Long-term follow-up in childhood cancer

Long-term follow-up in childhood cancer

Long-term follow-up clinics at the centres where children receive treatment are part of Children's Cancer Services in New Zealand. Once treatment has ended, your child's oncologist will continue to check your child at the hospital outpatient clinic. At some time over the following two to four years, the oncologist will discuss transfer into the long-term follow-up clinic.

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.

Once treatment has ended, your child's oncologist will continue to check your child at the hospital outpatient clinic. At some time over the following two to four years, the oncologist will discuss transfer into the Late Effects Assessment Programme (LEAP). One of the reasons for long-term follow-up is continued monitoring for late effects of cancer treatment.

Late Effects Assessment Programme (LEAP)

Some cancer treatments can cause health problems that may not occur until many years after treatment has finished. These are often referred to as late effects. They can vary in their degree of seriousness and complexity so management and treatment vary as well.

Late effects may be physical, emotional, social or educational and may occur 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 effect the development of late effects.

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

The team at the long-term follow-up clinic includes a paediatric oncologist, a nurse specialist and a psychologist. When you are ready to transition into long term follow-up you will receive a 'health passport' (a summary of your / your child's treatment). Each time you go to see the LEAP team you will have a full health check, as well as education and information on health risks you / your child may have or may be at risk of developing in the future.

  • check that the names and phone numbers of the nurse specialist, oncologist and psychologist at your long-term follow-up clinic are listed in the page Important contacts for your child with cancer
  • if you feel you don't have enough information, ask the oncologist and nurse at the long-term follow-up clinic to discuss your child's individual risks with you again
  • for more information about late effects, see Where to go for more information and support

Common late effects

Growth

Some treatment especially radiotherapy to the brain and / or spine can slow growth. Yearly height measurements help predict if there is a problem. Specialised tests and treatments may be recommended by the oncologist, if this late effect is developing.

Heart

A small number of children who have been treated with radiotherapy to the chest or who have received chemotherapy medicines called anthracyclines such as Doxorubicin or Daunomycin may have problems with their hearts. 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. The function of the thyroid gland can be checked by blood tests and low levels of malfunction are treated with oral medication.

Fertility

Sexual development can be affected by some chemotherapy medicines and by radiation therapy to the area of the pelvis, sometimes causing 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 may be recommended.

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. Psychological testing can be carried out if appropriate to identify areas of concern. Support and management strategies can be put in place to help overcome problems.

Health passport

A 'health passport' is a treatment summary created for all children attending a long-term follow-up clinic. It contains the following information for each child:

  • name of the disease, date of diagnosis and stage of the disease
  • name of the study or treatment protocols used
  • date treatment finished
  • treatment given including all chemotherapy medicines and dosages
  • types and dates of surgery
  • radiotherapy, dosage and area of the body treated
  • names and dates of any significant complications which occurred during treatment
  • information sheets on any late effects that could develop based on knowledge of the disease, chemotherapy or radiation therapy given

When you receive the personal 'health passport' for your child, you can file it after the patient-held record at the back of your folder.

Where to go for information and support

On this website
Childhood cancer: Where to go for more information and support

Note that this fact sheet is part of a section about childhood cancer. To access the rest of the content in this section, see Childhood cancer.

Further reading
Keene N, Hobbie W, Ruccione K. Childhood cancer survivors. A practical guide to your future. 2000, 2006. 2nd ed. USA: Patient Center Guides.
Zacharin M, Tiedemann K, Sexton M. Long-term effects of cancer treatment. A guide for patients and families. 2001. USA: Miranova.

Overseas websites

Children's Cancer and Leukaemia Group UK www.cclg.org.uk
Good website for survivors aged 15 and over. Discusses issues including fertility, education, travel, lifestyle and how to keep healthy as well as simple fact sheets on potential late effects. See their publications including Aftercure: A guide for teenage and young adult survivors of childhood cancer.

American Childhood Cancer Organization www.acco.org
Well written and easy to understand information on many common late effects. Written by Kevin Oeffinger MD and Nancy Keene.

Children's Oncology Group www.survivorshipguidelines

Acknowledgements

All the fact sheets 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 National Child Cancer Network Clinical Leader.
 

This page last reviewed 27 February 2013.
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