Children Diagnosed With Cancer: Understanding the Health Care System

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Children Diagnosed With Cancer: What to Expect From the Health Care System

When a child or teen is diagnosed with cancer, families and parents will face and need to cope with many problems. Here are ideas for navigating the health care system after your child’s diagnosis. This is one in a series for parents and loved ones of a child with cancer. The other pieces cover how to cope with the cancer diagnosis, returning to school, dealing with the late effects of treatment, and financial and insurance matters.

When a young person is diagnosed and treated for cancer, both the patient and the family enter the complex, and often frightening world of modern medicine. Hospitals and medical centers can be big, confusing places. Hospital rooms can be 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 need to be called to check coverage, try to get approval for tests and procedures, or question payment for care.

But you can learn to deal with all these changes! With time and experience, you and your child will get to know the medical centers and other places treatment is given. You’ll learn the routes and figure out all the shortcuts from home to the hospital. You’ll find the cafeteria and spots that offer needed privacy. The staff members will become real people and some key relationships will form.

Where are children and teens with cancer treated?

Most children with cancer are treated at large pediatric cancer centers. And most take part in clinical trials sponsored by the National Cancer Institute (NCI) through the Children’s Oncology Group (COG). Several medical facilities in the United States and abroad are members of COG and treat pediatric cancer patients. These treatment centers must follow strict guidelines to ensure that patients and families are fully informed about the potential value and risk of each clinical trial. Still, families do not have to enroll their child in a clinical trial and can choose instead to get the standard treatment. You can learn more about this in Clinical Trials: What You Need to Know, and you can learn how to find a COG hospital near you in Pediatric Cancer Centers. You can read these online or call us for copies.

When hospitalized, children and teens are treated in inpatient oncology units. Outpatient treatment (when the child is not in the hospital) may take place in hospital clinics, doctor’s offices, or even at home. When they are treated at home, patients usually get services from a home health agency. These services can include checking vital signs, giving chemo or medicines by vein, and other types of care. Home care staff may also teach family members to give drugs, manage equipment, and handle certain health problems.

Local pediatricians or family practice doctors may be involved in giving chemo, too. They may also take part in evaluating and treating symptoms, with guidance from the pediatric oncologist who is managing the child’s cancer treatment. This helps avoid long stays in the hospital. Every effort is made to have children go to school and continue their normal activities as much as possible while they are being treated.

How are children and teens with cancer treated?

Treatment depends on the type of cancer the child has, the stage of the cancer, the child’s age, overall health, and other factors. Cancer can be treated with chemo, radiation, surgery, or some combination of these. The doctor and other members of the cancer team will explain the treatments they recommend and answer questions before treatment starts. Treating childhood cancer often means consulting with medical specialists, especially if problems come up. Social, emotional, educational, and spiritual issues are also part of childhood cancer, and there are other specialists who can help patients and family with them. This is often called comprehensive care, and it’s discussed in the next section.

Keep in mind that the parent(s) or guardians must consent for the child’s treatment, which is why they usually want to learn all they can about the child’s cancer. If you’d like to know more about the type of cancer your child has, and about the treatments used, please call us. Or, you can find this information and more on our website at

Last Medical Review: 12/17/2014
Last Revised: 03/11/2015