More information about clinical trials is available in the free booklet Taking Part in Cancer Treatment Research Studies from the National Cancer Institute. To obtain the booklet, as well as a great deal of useful information about childhood cancer, call 800.4CANCER (800.422.6237). The booklet can also be downloaded from the Patient Education Publications section of the National Cancer Institute website at www.cancer.gov.
n WHAT ARE THE POTENTIAL LATE EFFECTS OF TREATMENT FOR RARE TUMORS? Like all patients who have been treated with chemotherapy or radiation, survivors of rare tumors may be at risk for developing problems or side effects months or years after treatment. Children who received radiation to the chest area as part of their cancer treatment are at risk for breast and cardiac complications. Other problems may include delayed development of puberty in males, decreased fertility (ability to have children), thyroid or lung problems, increased risk of developing a second primary cancer, delayed growth and development, or bone health issues. To help patients monitor their overall health after treatment is completed, it is important that cancer survivors seek appropriate cancer-related follow-up care. All survivors of childhood cancer should have access to cancer- related (treatment-related) follow-up care, services, and healthcare professionals knowledgeable about late effects of childhood cancer treatment. There are many survivor clinics located at cancer centers throughout the
country that offer access to experts who can address a wide range of follow-up concerns. To obtain more information on specific long-term side effects of cancer treatment, go to www.CureSearch.org.
n HOW CAN I WORK WITH MY CHILD’S HEALTHCARE TEAM? Because you know your child better than anyone else, the healthcare team will need your help in managing your child’s disease. It is important to communicate openly. Be sure to question your child’s doctor or nurse whenever there is anything you are unsure about. It helps to write down your questions when you think of them. Here are some examples of questions to ask: • What kind of cancer does my child have? • Has the cancer spread beyond the primary site? • What treatment choices are available? • What treatment do you recommend, and why? • What risks or side effects does the recommended treatment have? • What should we do to prepare for treatment? • What is my child’s outlook for survival? • What are the chances of the cancer coming back? • If my child’s cancer returns, are other treatment options available?
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