Treatment Decision Making Guide
Step 11 – Review Your Decision
When you have identified your preferred option, take time to review this decision with your child’s medical team. Write down what you understand and expect, including how you think the treatment will progress, and the outcome you anticipate. List the advantages and disadvantages of the selected treatment, and all other options.
Review this document with the doctors, to ensure you have included and clearly understood all relevant information. The medical team can help you add key points, clarify misunderstandings or assumptions, and tell you if your expectations are realistic.
Use this consultation to ask for any more information you need to fully understand and decide on your child’s care. For example:
- Specific cancer stage and location of tumours, and what that means.
- Potential risk to your child’s life.
- Goals of treatment.
- Medical procedures involved.
- Possible side effects, risks, and long term implications.
- Frequency and duration of treatment and follow up care.
- Potential to save sight.
- Recovery and rehabilitation.
- Estimated cost for all medical care, including follow-up.
After the discussion, ask yourself if this decision still makes sense and feels right to you. You have the right to ask more questions, to change your mind, and to seek another opinion, so long as doing so does not cause a dangerous delay in treatment.
Treatment decisions for retinoblastoma are challenging, and you need to have as much confidence in your final choice as possible. It is not uncommon to explore several options and seek several opinions from different retinoblastoma specialists before making the decision you feel is best for your child and family.
However, retinoblastoma is a fast-growing cancer and leaving it untreated for a long time will put your child’s life at risk. Do not delay prompt treatment to seek another opinion for eye-salvage 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.