You will usually meet with your child’s doctors on the last day of treatment or soon after to discuss follow up care.
The doctors will examine your child, discuss potential side effects and possible relapse, and explain the follow up plan.
Talk with your child about this follow up plan. Help her understand that EUAs and other tests will continue for some time after treatment. If you find this difficult, ask a child life specialist, nurse or doctor for help.
The doctors will usually discuss an immunization catch up schedule if your child has had chemotherapy. If this is not discussed, ask the oncologist about it.
Around the world, children frequently do very well with initial treatment, but relapse weeks or months later. When the child is not followed very closely, the new cancer activity is not detected early. This can cost children their eyes, and for many children in the world who could be cured, lack of follow up care is fatal.
Short and Medium Term Follow Up
The risk of further cancer activity depends on the type of retinoblastoma, stage of disease at diagnosis, treatment history and results of genetic testing. Together, these factors will determine the follow up schedule for your child.
Follow up care will involve regular EUAs and office eye exams for at least several years. Physical exams, blood tests and other procedures will very depending on the extent of your child’s cancer and treatment received. Learn more about follow up schedules.
Long Term Follow Up
Children who receive chemotherapy or radiotherapy should be closely followed throughout life. Many survivors experience physical and mental health issues arising from therapy. Identifying these early enables prompt interventions that minimize negative impact on the person’s life
As the child grows up, genetic counseling should be offered to help work through the genetic issues relating to retinoblastoma.
Carriers of a constitutional RB1 mutation and children treated with chemotherapy or radiotherapy should also receive information about their lifelong risk of developing second primary cancers. They should have opportunities to discuss their risk with doctors specializing in retinoblastoma.
Diagnostic radiation can increase the risk of second cancers in carriers of a constitutional RB1 mutation. CT scans, bone scans and other x-rays should be avoided in routine follow-up care.
To be responsible advocates for their own health and that of their future children, survivors must be fully informed about their cancer history and genetic status. They must be able to communicate this information effectively with others so that prompt action can be taken if they develop problems later in life.
Long term oncology follow up clinics provide the best opportunities for specialist support, education and early intervention. Learn more about long term follow up.
