n WHAT ARE THE POTENTIAL LONG-TERM EFFECTS OF THERAPY? The major concern in children with Wilms tumor is long-term function of the remaining kidney. The Journal of Urology reported data from the National Wilms Tumor Study Group and the U.S. Renal Data Systems that less than 1% of the children with the disease in only one kidney developed kidney failure. Children with the disease in both kidneys, and those who had a syndrome associated with Wilms tumor, had a higher risk of developing kidney failure. Children who received radiation therapy for their disease are at risk for mild scoliosis (sideways curving of the spine), muscular hypoplasia (underdevelopment of the muscle), and fertility and pregnancy problems (e.g., increased numbers of spontaneous miscarriages, low birth-weight babies, premature babies, babies with congenital problems, and neonatal deaths). A small number of children treated for Wilms tumor may develop congestive heart failure due to one of the chemotherapy drugs. Also, a very small number of children have developed a second cancer due to the chemotherapy given. Your child’s treatment team can discuss these risks with you in more detail.
n 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. Ask questions when there is anything you are not sure about. It may help to write down your questions as you think of them. This will help you remember all of your questions when the healthcare team is there. Here are some 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 for recurrence/relapse? • Has the cancer spread beyond the primary site? • What should we do to prepare for treatment? • What is the timeframe for determining histology?
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