Lifelong oncology follow up care is important for many survivors of childhood eye cancer.
Children who had chemotherapy or radiotherapy, and carriers of a constitutional RB1 mutation should receive life-long oncology follow up. All teen and adult survivors should have access to genetic counselling.
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 well so prompt action can be taken if they develop problems as adults.
Long Term Oncology Follow Up Clinics
As the number of childhood cancer survivors has increased, many hospitals have created long term survivor or late‑effects clinics. These programs offer ongoing multidisciplinary care to adult survivors of childhood cancer.
A long term follow up clinic usually includes an oncologist, oncology nurse specialist, radiation oncologist, neurologist, endocrinologist, genetic counselor, psychologist and social worker.
Services include review and education about the cancer and treatment history, and counseling about future cancer risk and genetic status.
The follow up clinic will also organise any necessary routine tests, and order tests if unexplained symptoms arise. Many centres conduct research into various aspects of long term survivorship, but participation is not required to receive care from the program.
If Long Term Follow Up Is Unavailable
Although long term follow up is recommended, most children are discharged at 18 (or earlier) with no life-long follow up plan. In many countries, long term oncology follow up clinics do not exist. This situation is compounded by primary doctors unfamiliar with cancer therapy late effects and the genetic implications of retinoblastoma.
If your child will not be followed by a long‑term survivor clinic, you will need to educate her about her cancer history and life-long risks. She will need your compassion and support in learning about her cancer and how this may impact her throughout life.
This information is vital if she is to be a responsible advocate for her own health as a teenager and throughout adult life.
Treatment Record
When your child finishes treatment, ask the doctors for a summary report of treatment that she can keep with her throughout life. A copy should be sent to her primary doctor, with a brief about long term implications of retinoblastoma.
If you compiled a medical records folder during treatment, keep this in a safe place. Explain this folder to your child when she is old enough to understand it, and give her a complete copy when she moves away from home.
If you are not given a summary of your child’s treatment history, and you did not keep a medical record folder, download and complete our Retinoblastoma Survivor Treatment Summary. Send a copy to the primary doctor, and give a copy to your adult child.
