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What Are Late Effects, and What Should You Know for the Future?

Late effects are new problems that can occur months to years after therapy has ended. Whether or not a child will develop a late effect depends on a number of factors. The most important of these factors include the type and amount of treatment an individual received (for example, radiation therapy, specific chemotherapy drugs) and the child’s age at the time of treatment. Other factors include the type of tumor and its location within the brain. In general, children who are treated at a young age (younger than 7 years) and those who receive the most intensive therapy (for example, high doses of radiation combined with high doses of several chemotherapy drugs) are more likely to develop late effects. However, it is important to remember that everyone is unique and that no two people react in exactly the same way to a given treatment. Equally important is that being at risk for a given problem does not necessarily mean a child will develop the problem. Clearly, knowing the details of your child's cancer treatments is essential and will help your child’s health care providers, both current and future, determine which late effects your child may develop over time.

What should you know for the future?

As should be clear from the previous discussion, it is critical that you have available to you a detailed history of your child's previous therapy. This should include

  • The exact diagnosis and date of diagnosis
  • Names, modalities and total doses of all chemotherapy drugs
  • Doses and sites of all previous radiation therapy
  • Sites of all surgeries
  • The start and stop dates for each treatment

This information can usually be obtained from the team supervising your child's cancer therapy. At the end of treatment, it’s a good idea for you to ask your child’s neuro-oncology team to review with you the treatments your child received as well as any late effects that might occur as a result of these therapies. If appropriate, this may be the time to begin to make arrangements for follow-up treatment with specific specialists (for example, a neuropsychologist or pediatric endocrinologist). Charting your child's follow-up care early, at the end of planned therapy, will help ensure a smooth transition from treatment to life after treatment.

“We created a medical data sheet to hand over to all new medical professionals we came into contact with. It was helpful that we maintained our journal even after treatment ended, for over the years, it is a quick and easy resource to rely on.”
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