WHAT NEW METHODS OF TREATMENT ARE THERE?
Your provider and treatment team will discuss all available treatment options with you and may present a clinical trial that is available for the treatment of your child’s retinoblastoma. In clinical trials, the best known (standard therapy) treatment for retinoblastoma is compared with a new treatment plan that is believed to be at least as good as, and possibly better than, the standard treatment. Clinical trials allow providers to determine whether promising new treatments are safe and effective. Participation in clinical trials is voluntary. Because clinical trials involve research with new treatment plans, all of the risks cannot be known ahead of time, and unknown 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 will discuss the risks and potential benefits with your child’s provider and treatment team. A useful website for information about clinical trials for retinoblastoma is ClinicalTrials.gov (NCI website).
HOW LONG WILL MY CHILD’S THERAPY LAST?
The length of your child’s therapy depends on the stage and extent of your child’s disease at the time of diagnosis. Treatment time will vary depending on the amount of therapy that is needed. Follow-up blood tests and check-ups between and following treatments generally are done in the clinic or doctor’s office. Timing of these visits will depend on the treatment given and will be planned carefully by your team. Your child will require close follow-up initially after completion of therapy with longer time intervals between visits as the time from diagnosis lengthens. Surveillance exams will continue throughout his or her entire life. LIFE-LONG RECOMMENDATIONS Maintaining lifelong surveillance visits (the schedule will vary between those with the inherited disease vs non inherited) with an ocular oncologist and a pediatric or adult team that specializes in screening and managing long term issues for a retinoblastoma survivor is very important. Your team will guide you as to what long term effects may be associated with specific treatments and how best to monitor for them. Striving to lead a “healthy lifestyle” and being vigilant about seeking attention for any new health issues is critical Most survivors of retinoblastoma will lead a happy and productive life.
WHAT ARE MY CHILD’S CHANCES OF GETTING ANOTHER CANCER?
Children who have the germline, or hereditary, form of retinoblastoma are at a greater risk of developing cancer in other parts of the body. 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. A genetic counselor can help you understand your child’s risk for secondary cancers and what type of screening tests they should have throughout their life.
14
Association of Pediatric Hematology/Oncology Nurses (APHON)
Powered by FlippingBook