Children Diagnosed With Cancer: Understanding the Health Care System

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Children Diagnosed With Cancer: Understanding the Health Care System

When a child or teen is diagnosed with cancer, families and parents will need to know about and cope with many problems. This document, which offers ideas for coping and moving forward after diagnosis, is one in a series of documents for parents and loved ones of a child with cancer. The other documents have information on how to cope with the cancer diagnosis, returning to school, dealing with the late effects of treatment, and financial and insurance issues.

When a young person is diagnosed and treated for cancer, both the patient and the family enter the strange, complex, and often frightening world of modern medicine. Hospitals and medical centers can be big, confusing places with seemingly endless corridors and many buildings. Hospital rooms can be drab and scary. Professionals and staff members have questions to ask, tests to do, and information to share. But medical terms can sound like a foreign language. There are endless forms to fill out. Insurance or managed care providers are called often as families check coverage, try to get approval for tests and procedures, or question payment for care.

The schedules and routines of daily family life are changed to fit in the time-consuming treatment plan. Family members are separated as one parent returns to work, one cares for the sick child, and siblings go to school. Parents must give up some control of their sick child and place their trust in the strangers that make up the cancer care team.

But with time and experience, patients and families get to know the medical centers and other places where treatment is given. They learn the routes and figure out all the shortcuts from home to the hospital. They find the cafeteria and spots that offer needed privacy. They bring blankets and pictures from home to brighten rooms. They pack snacks and toys and books for clinic visits. They learn their way around miles of hallways. The staff members become real people and some key relationships start to form. Children with cancer and their parents adjust to this new world and often become expert in dealing with childhood cancer.

The discussion here assumes that you have already read Children Diagnosed With Cancer: Dealing With Diagnosis. If not, you can read it on our Web site at Or you can call us at 1-800-227-2345 to order a free copy.

Getting started

Here are some tips to help patients and families begin to understand and cope with the health care system:

  • Before you go, look at the hospital’s Web site. Most have sites with a lot of information that can help you on your first visit.
  • Ask for maps or a tour of the hospital.
  • Have each person you meet explain the part they will play in caring for your child.
  • Find out exactly where treatment will be given.
  • Make hospital rooms as homey as possible.
  • Take things for your child to do during the time spent in the clinic.
  • Find out what role the child’s referring doctor or pediatrician will have during this time.
  • Check on what your insurance or managed care company will require.
  • Ask to have unfamiliar terms defined for you. Don’t be afraid to ask questions.
  • Read over the written materials you get from the cancer team or from your American Cancer Society.
  • Ask team members to describe how the system works.
  • Talk with other parents to see what helped them.

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