SURVIVORSHIP continues throughout your life. Whether you develop any late effects from your treatment for childhood cancer depends on your disease, your age at diagnosis, your sex, the treatment received, genetic predisposition, and complications you had during treatment. For many cancers, treatment toxicity has lessened over the years; for others, eliminating the cancer comes at a higher price.

This chapter is divided into sections that describe the major cancers of childhood and adolescence in alphabetical order: acute lymphoblastic leukemia (ALL), acute myelogenous leukemia (AML), brain tumors, Ewing sarcoma, Hodgkin lymphoma (formerly called Hodgkin’s disease), neuroblastoma, non-Hodgkin lymphoma (NHL), osteosarcoma, rare cancers, retinoblastoma, rhabdomyosarcoma, and Wilms tumor. Brief descriptions of the cancers, their treatments, and possible late effects are included. Because many diseases are now treated with stem cell transplants (which includes bone marrow, stem cell, and cord blood transplants), a separate section about this topic is included after the disease sections. At the end of the chapter are tables listing the treatments used and some of the tests you may need to monitor your health.

These tables and the Children’s Oncology Group’s follow-up guidelines ( www.survivorshipguidelines.org ) will help you better understand your risks based on the treatment you received and can help you make choices that lessen your chances of developing a particular problem. For instance, if you are at increased risk for heart disease, you can decrease the full impact of this risk by eating a healthy diet, doing the right kinds of exercise, and not smoking.

The tables will help you keep all medical caregivers updated on the follow-up necessary to maximize your health. For this information to be most helpful, ask your oncologist or nurse practitioner to fill in the Cancer Survivor’s Treatment Record (at the back of this book) or give you a treatment summary so you know which sections of the tables apply to you.

Adult survivors of childhood cancer are pioneers; researchers are still learning about effects of earlier treatments as survivors grow and age. The late effects from current protocols may not be completely understood for decades. Therefore, at the time of diagnosis, it is not possible to predict all potential long-term effects. Even with known late effects, there is considerable variation from person to person. Just because it may happen does not mean it will happen.

Certain groups of children, adolescents, and young adult survivors are more at risk for side effects than others. Reading the following sections for details about late effects and getting thorough follow-up care will maximize your chance for a long and healthy life and prepare you to talk over any questions or concerns with your healthcare provider. All of the statistics in the following sections are from the National Cancer Institute (NCI) website ( www.cancer.gov/cancertopics/pdq/pediatrictreatment ) and an NCI publication titled Cancer Incidence and Survival Among Children and Adolescents . ¹