LISA BASHORE, PhD, APRN, CPNP-PC, CPON

JOANNE QUILLEN, MSN, APRN, PNP-BC

OVER 80 PERCENT of the children and adolescents (under age 20) diagnosed each year with childhood cancer can now be cured. Survivors of childhood cancer often find that the illness and its treatment changed their lives in many powerful, and often positive, ways. There is much to celebrate.

However, long-term survivors of childhood cancer face an uncertain future. The surgery, radiation, chemotherapy, and stem cell transplants used to cure children sometimes affect growing bodies and developing minds. Complications from these treatments may occur later in life and are known as late effects. In addition, some survivors encounter job discrimination, difficulties obtaining insurance, and emotional or social difficulties.

During your (or your child’s) journey through the many phases of survivorship, you may find yourself educating your family, friends, and healthcare providers about your physical and psychological responses to treatment and its after effects. Knowing about your disease, its treatment, and potential late effects will help you advocate for the care you need to maximize your health and well-being.

This chapter discusses some of the many stages of survivorship covering the transition from active treatment to going off treatment and the shift from childhood/adolescence to the independence of adulthood. To take charge of your health, you need to collect information about your treatment and then assemble a team to help chart your medical course and help you monitor your healthcare. This chapter discusses ways to find the best healthcare providers for your unique needs.

Some survivors are fortunate to live near a major cancer center with a comprehensive survivorship clinic for their transitional and long-term health care after treatment ends. For others who don’t, see specific guidelines on how to assemble your own health care team who is knowledgeable about the possible late effects and proper guidelines for follow-up, screening and testing (See section later in this chapter, Leaving your treatment facility and Creating your own health care team).