• Disturbance in sexual development and adult infertility—Ifosfamide and cyclophosphamide, which comes from a class of chemotherapy drugs called alkylating agents, may cause disturbance in sexual development and infertility as an adult. Boys are affected more than girls. Methods to bank female eggs or male sperm should be explored when it is age appropriate. These methods should be reviewed with your child’s healthcare team. Your healthcare team also will review if it is safe to postpone the start of chemotherapy for these fertility procedures. Information concerning infertility and fertility preservation may be found on the LiveStrong website at Fertile Hope website at https://www. livestrong.org/what-we-do/program/fertility and in APHON’s Plan Now, Parent Later resources, available at https://aphon.org/education/patient-family-resources . • Weakened bones and impaired growth—Radiation may have long-term side effects on bones exposed to radiation. Side effects include weakening and slowed or limited bone growth. This can result in differences in the lengths of the extremities, as well as altered function of the affected extremity. Your child’s healthcare team will discuss with you ways to improve bone health and how to compensate for limitations in bone growth. • Hardware failure and infection—If your child underwent surgery to remove the tumor from a bone, internal hardware (also called a prosthetic) was likely placed inside your child’s body. Internal prosthetics generally need to be revised in the future through surgical procedures to account for the child’s growth. Internal prosthetics also come with a lifelong potential risk of infection and hardware failure, which require close follow-up care with your surgeon. For children undergoing amputation, external prosthetics often are used to aid in function and mobility. External prosthetics also require future changes to be made to accommodate the child’s growth and for other reasons.
HOW LONG WILL MY CHILD’S THERAPY LAST? Treatment for Ewing sarcoma typically lasts about 8–10 months. After treatment is finished, frequent physical exams and imaging are required for several years to monitor for the return of the cancer and for any side effects of treatment. Yearly follow-ups will be needed throughout your child’s life to monitor for possible late side effects from treatment, such as heart and lung problems, slowed or decreased growth and development of the bones, changes in sexual development and ability to have children, changes in intellectual ability or learning problems, and development of secondary cancers.
WHAT NEW METHODS OF TREATMENT EXIST? Most advances in the treatment of childhood cancer have been made through processes called clinical trials. During clinical trials, the best known, standard treatment for a particular cancer is compared with a new, experimental treatment. This experimental treatment is believed to be at least as good as, and possibly better than, the standard treatment. Clinical trials allow doctors to determine whether promising new treatments are safe and effective. Participation in clinical trials is voluntary. Because clinical trials involve research into new treatment plans, all risks and side effects cannot be known ahead of time. However, children who participate in clinical trials can be among the first to benefit from new treatment approaches. Before making a decision about your child’s participation in a clinical trial, you should discuss the potential risks and benefits with your child’s healthcare team.
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