WHAT NEW METHODS OF TREATMENT ARE THERE? Clinical trials and research studies have provided progress and scientific discoveries to continually advance the treatment of childhood cancer. A clinical trial compares the best known (standard) treatment for a certain cancer with a new (experimental) treatment that is believed to be at least as good as, and possibly better than, the standard treatment. Clinical trials let doctors decide whether promising new treatments are safe and effective. Joining in clinical trials is voluntary and requires informed consent. During the informed consent process, the treatment choices and how they differ are explained to you. Because clinical trials involve research into new treatment plans, all risks cannot be known beforehand, and unknown side effects may occur. Before making a decision about your child’s participation in a clinical trial, you should talk about the risks as well as the potential benefits with your child’s doctor and treatment team. More information about clinical trials is available from the National Cancer Institute (NCI) at https://www. cancer.gov/about-cancer/treatment/clinical-trials/taking-part . NCI also offers additional information about germ cell tumors at www.cancer.gov/types/extragonadal-germ-cell . HOW CAN I WORK WITH MY CHILD’S HEALTHCARE TEAM? The care of your child requires a team approach. You are a key player on your child’s healthcare team. You know your child better than anyone else, and your input is important. Other members of your child’s healthcare team include doctors, nurses, pharmacists, and social workers.
Always communicate openly with the members of your child’s healthcare team. If there is anything you are not sure about, ask the team. Write down your questions as you think of them, so you’ll remember to ask them during your next meeting with your healthcare team. Important questions you may want to ask: • What stage is the disease and what does that mean? • What treatment choices are available?
• What treatment do you recommend and why? • What are the risks or side effects during the treatment? • What are the risks and side effects after the treatment? • What are my child’s chances for survival? • What are the chances that the disease or condition will recur? Use this space to write down some of the additional questions you might have:
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