Cancer : When Your Child Is Diagnosed

by National Cancer Institute

(Page 2 of 14)

When Your Child Is Diagnosed

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 2 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.

About the Author

www.nci.nih.gov
The National Cancer Institute's research programs are extensive and contain many innovative initiatives. I invite you to explore our Web site to find out more about the exciting work being conducted here at NCI and by NCI-supported scientists throughout the country.