Children Diagnosed With Cancer: Understanding the Health Care System

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Getting and keeping medical records

It’s important to know what kind of treatment your child has and what affect this treatment might have as the child grows up. Ask the doctor to help you stay aware of what long-term effects might occur based on the treatments your child gets. And in the future, be sure your adult child knows the details of their childhood cancer and its treatment, so that this information can be given to new doctors.

It’s a good idea to get and keep copies of your child’s treatment records as treatment progresses. Records like these are usually destroyed at some point, and may not be available more than a few years after treatment. There are certain pieces of information that you and your child should have and keep for the rest of your child’s life. If you aren’t sure where to start, check with your treatment team about how to go about getting each of these reports:

  • Copies of all pathology reports from biopsies and surgeries.
  • If there was surgery, a copy of the operative report (or reports, if there was more than one surgery).
  • If there were hospitalizations, copies of the discharge summaries doctors prepare when patients are discharged from the hospital.
  • If the child had chemo, a list of the total dose of each drug used. Certain drugs may have specific long-term side effects. If you can get a list of drugs from the pediatric oncologist, it can help any new doctors your child has should one of these effects surface.
  • If radiation was given, a final summary of the dose and field.
  • If your child had a transplant, you need to know the exact type of transplant and whether your child had chronic graft versus host disease, or any complications.
  • Any problems or complications (serious enough to require hospitalization or other treatment) your child had during or shortly after cancer treatment.

Treatments that are used to beat cancer can cause delayed effects that may lead to problems later on. While these result from life-saving treatment, your child and your child’s future doctors need to know about them. Researchers are looking for ways to reduce long-term effects, but right now, children who have been cured of cancer may have to deal with some of these effects for the rest of their lives. For more information, see our document called Childhood Cancer: Late Effects of Cancer Treatment.

Last Medical Review: 07/02/2012
Last Revised: 07/02/2012