Young People with Cancer: A Handbook for Parents

by National Cancer Institute

Childhood Cancer

Young People with Cancer gives you information on all stages of your child's illness. It tells you what to expect and suggests ways to prepare for different situations. It can guide you to become your child's best advocate or supporter. You know your child better than anyone else - your child's personality, how your child copes with unknown situations and fear, what makes your child laugh or cry. You know what works best - how to humor and talk to your child and how to help your child relax. Try to remember that you are a key part of your child's treatment.

This booklet was reviewed by health professionals and, most important, by parents of children with cancer. Although this booklet does not tell you everything about cancer in children, it is a start, and it directs you to other sources of information. You may want to share this booklet with friends and relatives who want to learn more about what you and your child are going through. Use this booklet to learn:

• what cancer is and what the different kinds of cancer are
• how to find the best treatment
• about cancer treatment and side effects
• about common medical procedures
• how to talk to your child about cancer
• how to handle your own feelings, your child's feelings, and the feelings of others
• about common health issues
• what the future holds and
• where to get more information.

Because this booklet contains so much information, it may be useful to refer to the different sections as you need them. You can use the Table of Contents to find the sections of most interest to you. Words that you may not be familiar with are underlined the first time they appear. You can click on these words to see their definitions. The definitions are taken from the National Cancer Institute's Cancer.gov dictionary 1.

More children than ever are surviving childhood cancer. Over the last 30 years, survival into adulthood increased from 30 percent to 80 percent. There are new and better drugs and methods to help children deal with the side effects of treatment. And children who have had cancer now have a better quality of life throughout childhood and into adulthood; fewer long-term ill effects follow the treatment.

Yet, in spite of all this good news, cancer is still a serious disease. You are not alone in facing your fears; help is available. A treatment team - doctors, radiation therapists, rehabilitation specialists, dietitians, oncology nurses, and social workers, among others - can help you and your child deal with the disease. They will also help ensure that your child gets the best treatment available with as few ill effects as possible. Resources such as this booklet provide information on childhood cancers and their treatment, suggestions on how to make your child as comfortable and as pain-free as possible, and advice on how to make time for family and friends.

What Is Cancer?

Cancer is a group of many related diseases that begin in cells, the body's basic unit of life. To understand cancer, it is helpful to know what happens when normal cells become cancerous.

The body is made up of many types of cells. Normally, cells grow and divide to produce more cells only when the body needs them. This orderly process helps keep the body healthy. Sometimes, however, cells keep dividing when new cells are not needed. These extra cells form a mass of tissue called a growth or tumor.

Tumors can be benign or malignant.

• Benign tumors are not cancer. They can often be removed and, in most cases, they do not come back. Cells from benign tumors do not spread to other parts of the body. Most important, benign tumors are rarely a threat to life.

• Malignant tumors are cancer. Cells in these tumors are abnormal and divide without control or order. They can invade and damage nearby tissues and organs. Also, cancer cells can break away from a malignant tumor and enter the bloodstream or the lymphatic system. That is how cancer spreads from the original cancer site to form new tumors in other organs. Cancer that has spread is called metastatic cancer.

Most cancers are named for the organ or type of cell in which they begin. When cancer spreads (metastasizes), cancer cells are often found in nearby or regional lymph nodes (sometimes called lymph glands). If the cancer has reached these nodes, it means that cancer cells may have spread to other organs, such as the liver, bones, or brain. When cancer spreads from its original location to another part of the body, the new tumor has the same kind of abnormal cells and the same name as the primary tumor. For example, if lung cancer spreads to the brain, the cancer cells in the brain are actually lung cancer cells. The disease is called metastatic lung cancer (not brain cancer).

Children can get cancer in the same parts of the body as adults do, but some types of cancer are more common in children. The most common form of childhood cancer is leukemia. Leukemia is cancer of the blood. It develops in the bone marrow, which is a spongy substance that fills the inside of the bones and makes blood cells. Other cancers often found in children are brain tumors, childhood lymphomas, Hodgkin's disease, Wilms' tumors, neuroblastomas, osteogenic sarcomas, Ewing's sarcomas, retino-blastomas, rhabdomyosarcomas and hepatoblastomas. The Appendix contains information on the major types of childhood cancer.

Children's cancers do not always act like, get treated like, or respond like adult cancers. Avoid reading about adult cancer to learn about your child's prognosis. Childhood cancers can occur suddenly, without early symptoms, and have a high rate of cure. You can find more details about these types of cancer in other National Cancer Institute (NCI) booklets. NCI's What You Need to Know About... brochures have information about specific types of cancer. (See page 96 for more information on available booklets.) To receive copies from the NCI-supported Cancer Information Service (CIS), call 1-800-4-CANCER (1-800-422-6237) or TTY at 1-800-332-8615. Also, many NCI publications may be viewed or ordered on the Internet at http://cancer.gov/publications.

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.