Treatment decisions can have unintended consequences. These complications, known as late effects of treatment, are not unique to children. However, because children can live for many decades post-treatment, it is essential that parents and other caregivers be aware them. Surgery, radiation therapy and chemotherapy can all contribute to late effect complications.
Late effects vary considerably based upon multiple factors including a person’s age, tumor type and location, treatment type and duration. Some effects may be apparent almost immediately, but some may not emerge until years after treatment has stopped. It is extremely important that brain tumor survivors of all ages be followed by a medical team versed in late effects throughout their lifespan.
Some of the more common complications of treatment are listed below. Some can be addressed through rehabilitation and other accommodations. All require ongoing monitoring.
- Physical disabilities such as weakness of muscles and diminished coordination
- Learning disabilities including problems with memory, attention, comprehension and information processing
- Behavioral changes and emotional issues
- Hearing and vision problems
- Seizures and other neurological issues
- Hormonal problems including slowed growth, hypo- or hyperthyroidism, diabetes, early or late puberty, and infertility
- Damage to internal organs and/or other body systems
- The possibility of developing secondary cancers in other parts of the body or a recurrence of a tumor in the brain
Lifetime Monitoring & Maintaining Medical Records
Childhood brain tumor survivors need to be closely monitored. Most large pediatric brain tumor treatment programs have specific survivor programs. These programs provide specialized health monitoring throughout childhood. They also identify specific risks based upon a thorough review of the child’s medical history including identification of risks associated with specific tumor types or interventions. As a child enters adulthood, survivor programs help families transfer ongoing care out of the pediatric setting and into a medical program that can provide the specialized monitoring the patient will need as an adult.
Parents and caregivers should maintain or know how to access a complete, detailed medical record of their son or daughter’s treatments. As more information is known regarding the effects of specific treatments, your child’s medical record will provide the information needed to better understand your child’s specific risks and influence the recommended course of follow-up.
Your medical team is the first line of defense to address late effects and to ensure close monitoring of your child’s condition.