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Long-term Follow-up Care

Long-term follow-up for children’s cancer survivors typically begins when patients are in remission and fully recovered from the immediate effects of treatment.  Often, this is about two years after completion of treatment. In long-term follow-up, the goal is to help former patients stay as healthy as possible and to do well in school and eventually at work.  It is important for all survivors to continue to have regular medical care for life.  This is often called survivorship care.  There are various ways that survivorship care may be provided in your community, including:

No matter where survivorship care is received, it is important for survivors to ask questions to make sure they know about the treatment they received and the specific follow-up care they need to stay in the very best possible health.

The Children’s Oncology Group has specific guidelines for the types of monitoring needed depending on the cancer treatment that was given.  These guidelines are designed to begin two or more years after the completion of cancer treatment.  Ideally, survivorship care will be provided by specialists in survivorship medicine who understand the unique needs of children’s cancer survivors.  However, when a survivorship program is not available, a local primary care physician can work in partnership with the original treatment center or other long-term children’s cancer specialists to provide the recommended follow up care.

Accessing a Long-term Follow-up Healthcare Provider

Ask your child’s attending physician or nurse practitioner about survivorship care to learn when and how your child will receive this type of follow-up.  If your child is no longer followed in a pediatric treatment center, you may want to call a pediatric cancer treatment center near where you live to find out if they have a survivorship care program.  Or you may want to use the Internet.

Frequency of Long-term Follow-up Care

Most children’s cancer survivors need long-term follow-up visits once a year, although the schedule may vary considerably depending on individual circumstances.  Talk with your child’s healthcare provider about the monitoring your child needs to make a plan for long-term follow-up visits.  Long-term follow-up visits should include a comprehensive review of the survivor’s overall health and specific tests based on your cancer, the treatment you have received and any side effects of radiation, chemotherapy or surgery. The Children’s Oncology Group has developed Long-Term Follow-Up Guidelines.

Medical Care between Long-term Follow-up Visits

Children’s cancer survivors should identify a local primary healthcare provider that they can visit or call for routine illness or injuries.  Care for routine illness or injury is not the focus of the survivorship program or the pediatric oncology team.  If you have a new healthcare provider, make an appointment for a check-up with them so that they can get to know you before an illness occurs.  Bring a treatment summary with you to assist them in placing your illness in context.  If a problem comes up that may be related to cancer treatment, the primary healthcare provider can discuss this with the long-term follow-up team.

The Treatment Summary

In order for a healthcare provider to determine what follow-up care a survivor needs, it is important to have a summary of the treatment that was given.  The survivor or their parents should ask for a treatment summary from the hospital or clinic where they received their cancer treatment.  The treatment summary should be kept in a safe place, and a copy should be given to all healthcare providers involved in the survivor’s care (for example, your family doctor, your pediatrician, any specialists).

A Cancer Treatment Summary should contain the following information:

Late Effects

Problems related to cancer treatment that occur or persist after treatment is completed are known as "late effects."  If late effects do occur, recognizing them early gives the best chance of providing treatment that will help your child.  This is why ongoing follow-up care for children’s cancer survivors is so important. 

 

The First Month off Treatment
Two to Six Months off Treatment
Six to Twelve Months off Treatment
One Year off Treatment and Beyond
Young Adults Transitioning to Adult-Focused Care

© The Children's Oncology Group
The information and content provided on this website is made available for informational purposes only for children and their families affected by cancer. While the Children's Oncology Group strives to provide accurate and up-to-date information, the information may be out of date or incomplete in certain respects. Please do not rely on this information and seek the care of a qualified medical professional if you have questions regarding a specific medical condition, disease, diagnosis or symptom. The information and content presented herein is not intended to replace the independent clinical judgement, medical advice, screening, health counseling, or other intervention performed by your (or your child's) health care provider. Please contact "911" or your emergency services if this is a health emergency. No endorsement of any specific tests, products, or procedures is made herein.