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Young People with Cancer: A Handbook for Parents

  • Posted: 07/31/2003

When Your Child Is Diagnosed

Talking With Your Child's Doctor
How Can My Child Get the Best Treatment?

After your child's cancer has been diagnosed, a series of tests will be done to help identify your child's specific type of cancer. Called staging, this series of tests is sometimes done during diagnosis. Staging determines how much cancer is in the body and where it is located. To stage solid tumors, the doctor looks at the size of the tumor, the lymph nodes affected, and where it has spread. To stage leukemia, the doctor checks the bone marrow, liver, spleen, and lymph nodes around the sites where the leukemia can hide. Staging must be done to determine the best treatment. Many different tests can be used in staging, such as x-rays, MRIs, CT (or CAT) scans, and others. See Common Medical Procedures for a description of the various tests.

As soon as your child is suspected to have or is diagnosed with cancer, you will face decisions about who will treat your child, whom to ask for a second opinion (if desired or if the diagnosis is not clear), and what the best treatment is. After your child's staging is complete, the treatment team develops a plan that outlines the exact type of treatment, how often your child will receive treatment, and how long it will last.


Talking With Your Child's Doctor

Your child's doctor and the treatment team will give you a lot of details about the type of cancer and possible treatments. Ask your doctor to explain the treatment choices to you. It is important for you to become a partner with your treatment team in fighting your child's cancer. One way for you to be actively involved is by asking questions. You may find it hard to concentrate on what the doctor says, remember everything you want to ask, or remember the answers to your questions. Here are some tips for talking with those who treat your child:

  • Write your questions in a notebook and take it to the appointment with you. Record the answers to your questions and other important information.
  • Tape record your conversations with your child's health care providers.
  • Ask a friend or relative to come with you to the appointment. The friend or relative can help you ask questions and remember the answers.

Questions to Ask the Doctor and Treatment Team

When your child's treatment team gives you information about your child's cancer, you may not remember everything. That is natural. It is a lot of information, and your emotions will get in the way as you try to take it all in. Use the three techniques listed above - write, tape record, and ask a friend for help - to help you retain the information you need to be an effective partner with your child's treatment team. Make sure you know the answers to these questions:

About the diagnosis

  • What kind of cancer does my child have?
  • What is the stage, or extent, of the disease?
  • Will any more tests be needed? Will they be painful? How often will they be done?

About treatment choices

  • What are the treatment choices? Which do you recommend for my child? Why?
  • Would a clinical trial be right for my child? Why?
  • Have you treated other children with this type of cancer? How many?
  • What are the chances that the treatment will work?
  • Where is the best place for my child to receive treatment? Are there specialists - such as surgeons, radiologists, nurses, anesthesiologists, and others - trained in pediatrics? Can my child have some or all of the treatment in our home town?

About the treatment

  • How long will the treatment last?
  • What will be the treatment schedule?
  • Whom should we ask about the details of financial matters?
  • Will the treatment disrupt my child's school schedule?

About side effects

  • What possible side effects of the treatment can occur, both right away and later?
  • What can be done to help if side effects occur?

About the treatment location

  • How long will my child be in the hospital?
  • Can any treatment be done at home? Will we need any special equipment?
  • Does the hospital have a place where I can stay overnight during my child's treatment?

About school and other activities

  • Is there a child-life worker specialist (a professional who is responsible for making the hospital and treatment experience less scary for the child) to plan play therapy, schoolwork, and other activities?
  • When can my child go back to school?
  • Are there certain diseases my child cannot be around? Should I have my child and his or her siblings immunized against any diseases?
  • Will my child need tutoring?
  • Is information available to give to the school system about my child's needs as he or she receives treatment?


How Can My Child Get the Best Treatment?

Before your child starts treatment, make sure you feel comfortable with your choice of the doctor and hospital to treat your child's cancer.

Who Should Treat My Child?

It is best for your child to be treated by a health care provider who specializes in the diagnosis and treatment of children's cancers - a pediatric oncologist.

Once you have chosen a doctor and discussed a diagnosis and treatment plan, but before treatment has started, you may want to get a second opinion - that is, you may want to ask a different doctor to review the diagnosis and plan. Some insurance companies require a second opinion; some may pay for it if you ask. A second opinion may also be obtained during the course of treatment if it is not working as hoped. Most doctors support a parent's decision to get a second opinion and many even suggest you do so. To find specialists to get a second opinion, you might -

  • Ask your child's doctor to suggest a specialist for a second opinion.
  • Get the names of doctors who specialize in treating childhood cancer from the local medical society, a nearby hospital, or a medical school. You can find the telephone numbers for these organizations in your telephone directory or the Yellow Pages.
  • Contact an NCI Comprehensive Cancer Center for a second opinion and possible treatment. Considered "Centers of Excellence," these cancer centers' programs have been reviewed and selected by NCI. They offer the most up-todate diagnosis and treatment of cancer and are devoted to both basic and clinical research. To obtain information about the location of the different cancer centers, call the CIS at 1-800-4-CANCER (1-800-422-6237) or TTY at 1-800-332-8615.
  • Contact the Pediatric Oncology Branch, NCI, located in Bethesda, Maryland, to ask for a second opinion appointment. They can be reached at 1-877-624-4878.

What Is a Standard Therapy Versus a Clinical Trial?

Your child's doctor may recommend a standard therapy or a clinical trial. Standard therapy is the best treatment available outside of clinical trials for a specific type and stage of cancer.

A cancer clinical trial is a research study. In a clinical trial, a new treatment is used with a group of patients to find out:

  • if it is safe
  • if it destroys the cancer
  • if it has side effects and how severe they might be
  • if it is better than standard therapy.

These new treatments are first tested in the laboratory and on animals. If a treatment shows promise of being better than the standard therapy, it is tested with patients in a clinical trial.

Most clinical trials are carried out in steps called phases. Each phase answers different questions about the treatment. Patients may be eligible for studies in different phases, depending on their general condition and the type and stage of their cancer.

  • Phase I studies test new treatments in humans to determine if the treatment can be given safely and if it has harmful side effects. Researchers look for the best dose and the best way to deliver the treatment. Because less is known about the possible risks and benefits in Phase I, these studies usually include only a limited number of patients who would not be helped by other treatments.
  • Phase II studies focus on learning whether the new treatment actually has an anticancer effect. As in Phase I, only a small number of people take part because of the risks and unknowns involved.
  • Phase III studies compare the results of people receiving the new treatment with results of people receiving standard therapy. In most cases, studies move into Phase III testing only after a treatment shows promise in Phases I and II. Phase III studies may include hundreds of people around the country.
  • Phase IV studies evaluate the side effects of the new treatment - once it has been approved and is being marketed - that were not apparent in the Phase III trial. Thousands of people are involved in a Phase IV trial.

Clinical trials have played an important role in producing new and better treatments. About two-thirds of children with cancer are treated in clinical trials

You and your child's doctor can learn about clinical trials from PDQ® - NCI's cancer information database. PDQ® contains:

  • descriptions of current clinical trials, including information about the purpose of the study, who is eligible for the study, details of the treatment program, and the names and addresses of doctors and places conducting the study

You may ask your doctor to obtain information from PDQ®, or you may call the NCI-supported Cancer Information Service (CIS) at 1-800-4-CANCER (1-800-422-6237) or TTY at 1-800-332-8615 to ask for a PDQ® search. Read more about PDQ® on the NCI Web site, To find out about NCI trials taking place on the main campus of the National Institutes of Health in Bethesda, Maryland, you may also call the NCI's Pediatric Oncology Branch at 1-877-624-4878.

Where Should My Child Be Treated?

Once the treatment is planned, you will need to decide where your child will be treated. Treating children is different from treating adults. Whenever possible, it is best for your child to begin treatment at a hospital or treatment center where many children have been treated for cancer. Selecting a hospital and staff specializing in treating childhood cancer will help your child receive the best available treatment right from the beginning. To obtain information about hospitals and treatment centers that specialize in treating childhood cancer, call the CIS at 1-800-4-CANCER (1-800-422-6237) or TTY at 1-800-332-8615.