Treatment Decision Making Guide
Step 3 – Find Your Expert Team
Your child should ideally be treated by an ocular oncologist (eye cancer doctor) and paediatric oncologist (children’s cancer doctor) who are both familiar with retinoblastoma, and work together to plan and deliver care. When cancer is contained in the eye, the ophthalmologist leads the medical team. If cancer spreads outside the eye, the oncologist will lead the team.
Most centres of excellence also include an interventional radiologist or neurosurgeon who gives intra-arterial chemotherapy directly into the eye, a clinical nurse specialist, genetic counsellor familiar with retinoblastoma, psychologist, child life or hospital play specialist, oncology social worker, and a patient and family support program.
Your nearest specialist retinoblastoma centre may be a long way from home, but it is vital your child be treated by doctors experienced in retinoblastoma care. This is especially true if your child has bilateral, extraocular or trilateral retinoblastoma, or you are exploring eye salvage treatment for unilateral cancer.
Sometimes your child will be referred to the nearest paediatric oncology centre. This hospital may have an excellent childhood cancer program, and will likely be very able to remove an eye to save life. However, they may have little experience with complex eye salvage treatments, or chemotherapy for extraocular or trilateral retinoblastoma.
Always ask the doctors to clarify what experience they have in treating children with retinoblastoma. Questions include:
- Who is on your retinoblastoma team?
- How many children do you treat each year with unilateral/bilateral Rb?
- What treatments do you offer?
- What is your success rate in saving eyes/sight?
- Have any of your patients had extraocular spread after eye salvage?
- Do you consult with other retinoblastoma specialists? Who are they?
- Will you consult other retinoblastoma specialists about my child’s care?
- Do you use photos or eye scans to support virtual consultation?
- Will you show these photos to me to help me understand my child’s cancer?
- Is there time to get a second opinion without significant risk to my child?
- Do you have Child Life Specialist support in both oncology and ophthalmology?
- Is there a comparable Rb centre closer to home, or a more appropriate centre?
Retinoblastoma is an aggressive cancer and delaying treatment for a long time will put your child’s life at risk. While exploring treatment options and seeking a second opinion is common, do not delay prompt treatment if your child already has signs of very advanced or dangerous disease:
- The optic nerve is not clearly visible during EUA.
- A collapsed or shrunken eye (phthisis bulbi).
- High eye pressure (glaucoma).
- Bleeding in the front of the eye (hyphema).
- Infection in the eye socket (orbital cellulitis).
These are all signs that cancer is at high risk for spread outside the eye.
The One Retinoblastoma World map can help you find a centre as close to home as possible, or an appropriate second opinion team. This site brings together details of specialist treatment centres around the world, including patient numbers, team members, available imaging and treatments, and contact details. Some established treatment centres are not included on the map as they have not submitted their data.
