from new treatment approaches. Before making a decision about your child’s participation in a clinical trial, you should discuss the risks and potential benefits with your child’s provider and treatment team. More information about clinical trials is available in the free booklet Taking Part in Clinical Trials: What Cancer Patients Need to Know (National Cancer Institute Publication No. 98-4250). To obtain the booklet along with other useful information about childhood cancer, call 800/4CANCER (800/422-6237) or visit the National Cancer Institute website at www.cancer.gov/cancertopics/types/retinoblastoma. n WHAT ARE MY CHILD’S CHANCES OF GETTING ANOTHER CANCER? Children who have the genetic form of retinoblastoma are at a greater risk of getting another form of cancer than children who do not have the genetic form. It is believed that after the original diagnosis, the chance of another cancer occurring increases by about 1% a year. The most common types of second cancers are tumors of the bone, muscle, and skin. It is important that retinoblastoma patients continue to receive annual physical exams throughout their lives. If a second cancer occurs, the chance of cure increases the earlier it is found and treated. n HOW CAN I WORK WITH THE HEALTHCARE TEAM? Your child’s care requires a team approach. As a parent, you are a major part of the team, and your input is very important. Because you know your child better than anyone else, the medical and nursing staff will need your help as they provide comprehensive management for the disease. It is important to communicate openly with your child’s healthcare team. Be sure to question your child’s providers about anything of which you are not sure. It helps to write down your questions as you think of them.
Here are some examples of questions to ask: • Which kind of cancer does my child have? • Has the cancer spread beyond the primary (original) site? • What is the stage of the cancer, and what does that mean? • What treatment choices are available? • Which treatment(s) do you recommend and why? • What are the risks or side effects during and after the recommended treatment? • What can we do to prepare for treatment? • What is my child’s outlook for survival? • What are the chances of a recurrence?
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