End of Treatment
The end of treatment for retinoblastoma brings celebration, but also great uncertainty.
For most children who had their eye removed immediately at diagnosis, this is the end of treatment and surgery alone cures.
For children who have received eye-salvage treatment, the end of chemotherapy or radiotherapy is often not the end of their treatment journey. Long days of infusions, acute side effects, tests and transfusions are over, but many EUAs lie ahead.
With each EUA comes the possibility of new tumours, relapse and multiple laser or cryotherapy treatments, perhaps more chemotherapy or loss of the eye being treated.
Fear of relapse is an almost universal experience for parents at this time. These feelings are particularly intense when the child received chemotherapy after their eye was removed. Parents often ask “cancer in the eye can be found easily and controlled without threat to life, but what happens if my child’s cancer comes back?”
Cancer mutilates regular family life. The end of major treatment does not suddenly return everything to the carefree existence before diagnosis.
In time, you will find a new normal, settling into a different way of living that incorporates long-term effects of retinoblastoma, but you will be forever changed by it.
Commemorating the end of major treatment or clear pathology results after surgery can be very therapeutic for both children and parents.
You will usually meet with your child’s oncologist on the last day of treatment, and possibly also the ophthalmologist, who will explain the follow up plan.
This overview is intended only as a guide to the schedule you can expect after treatment. Ask your child’s doctors to clearly explain the follow up plan to you.
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.
There is no universal agreement on the best time to remove a central venous catheter. The plan depends largely on the thoughts of the individual doctor.
Most families struggle to rediscover normal life. For many, recapturing the days before diagnosis is impossible, but you can regain a calm, positive life again.
Relapse is devastating, especially after a long period of remission. Finding you are on the rollercoaster again is a gut-wrenching experience, but hope remains.
Carriers of a constitutional RB1 mutation and children treated with systemic chemotherapy or radiation have a risk of developing second primary cancers.
Parents, survivors and their primary doctors must be aware of risk for second cancer associated with retinoblastoma, and the symptoms of these cancers.
At the end of treatment, and if relapse occurs, asking lots of questions will help you make informed decisions about follow up care and further treatment.