Cancer : How Can My Child Get the Best Treatment?

by National Cancer Institute

(Page 3 of 14)

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

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.

Talking with Your Child

Your first question may be, "Should I tell my child about the cancer?" You may want to protect your child, but children usually know when something is wrong. Your child may not be feeling well, may be seeing the doctor often, and may have already had some tests. Your child may notice that you are afraid. No matter how hard you try to keep information about the illness and treatment from your child, others - such as family, friends, and clinic or hospital staff - may inadvertently say things that let your child know about the cancer. In addition, it will upset your child to find out that you were not telling the truth; your child depends on you for honest answers.

Why Should I Tell My Child?

Telling your child about his or her cancer is a personal matter, and family, cultural, or religious beliefs will come into play. It is important to be open and honest with your child because children who are not told about their illness often imagine things that are not true. For example, a child may think he or she has cancer as punishment for doing something wrong. Health professionals generally agree that telling children the truth about their illness leads to less stress and guilt. Children who know the truth are also more likely to cooperate with treatment. Finally, talking about cancer often helps to bring the family closer together and makes dealing with the cancer a little easier for everyone.

Parent's Questions

Parents have many questions about talking with their children about the diagnosis. Perhaps you have asked some of these yourself.

When Should My Child Be Told?

Because you are probably the best judge of your child's personality and moods, you are the best person to decide when your child should be told. Keep in mind, though, that your child is likely to know early on that something is wrong, so you may want to tell your child soon after the diagnosis. In fact, most parents say it is easiest to tell them then. Waiting days or weeks may give your child time to imagine worse things than the truth and develop fears that may be hard to dispel later. Certainly, it would be easier for your child if he or she is told before treatment starts.

Who Should Tell My Child?

The answer to this question is personal. As a parent, you may feel that it is best for you to tell your child. Some parents, however, find it too painful to do so. Other family members or the treatment team - doctor, nurse, or social worker - may be able to help you. They may either tell your child for you or help you explain the illness.

Thinking about what you are going to say and how to say it will help you feel more relaxed. But how do you decide just what to say? Family and close friends, members of the treatment team, parents of other children who have cancer, members of support groups (you can find information about them at the end of this booklet), and clergy members can offer ideas.

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.