Rare Tumors Patient & Family Handbook

Most are given through a vein or through the VAD. Some of the medicines are taken by mouth and can be given at home. When chemotherapy is given, close monitoring of your child will be a priority. Your child’s treatment team will explain the possible side effects of the specific chemotherapy medicines your child will receive. Radiation Therapy Radiation therapy may be used in the treatment of some rare tumors. Radiation therapy is a special kind of X-ray treatment that kills or damages rapidly growing cells like cancer cells. Radiation may be given before or after chemotherapy. If radiation therapy is necessary for your child, the radiation therapy specialist will discuss with you exactly how the radiation will be given and how long the treatments will last. Most children experience very few side effects while they are receiving radiation therapy. Some children may be more tired or have decreased appetites, and some may experience redness or increased pigmentation of the skin at the radiation site. The side effects of radiation depend on the area of the body treated, and they usually clear up after treatment. There can be side effects that develop later, however, and the possible effects will be discussed with you in detail by your treatment team.

n HOW LONG WILL MY CHILD’S THERAPY LAST? This depends on the type and stage of your child’s disease at the t i me of diagnosis. The length of treatment may be changed based on your child’s response to the treatment.

n WHAT IF THE CANCER RETURNS? Sometimes cancer may come back (also known as a recurrence or relapse). If this happens, your child’s medical team may suggest additional chemotherapy and radiation therapy.

n WHAT NEW METHODS OF TREATMENT ARE AVAILABLE? These childhood cancers are so rare, with so few children affected, that it is difficult to study them. The Children’s Oncology Group (COG) includes institutions that care for virtually all children with cancer in North America. COG has established a Rare Tumor Committee to focus on these cancers and increase knowledge of the diseases and their treatments. Most of the advances in the treatment of childhood cancer have been made through a process known as clinical trials. In clinical trials, the best known (standard) treatment for a particular cancer is compared with a new (experimental) treatment that is believed to be at least as good as and possibly better than the standard treatment. Participation in clinical trials is voluntary. Because they involve research into new treatment plans, all risks cannot be known ahead of time, and unknown side effects may occur. 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 all the risks and benefits with your child’s treatment team.

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