Treatment Decision Making Guide
Step 5 – Set an Intention to Make Balanced Decisions
As a loving parent, it is natural that you want your child’s treatment to cure their cancer, save their sight, preserve their cosmetic appearance, and have the least negative impact on their life.
Sadly, decisions about retinoblastoma care are rarely so easy.
To make the best decisions, you will need to:
- Explore all the facts, including the potential risks and outcomes you fear.
- Acknowledge the limitations and risks of each treatment.
- Assert that your child’s life and wellbeing is your absolute priority, followed by their eye and potential for sight.
Remain open to the possibility that your child may experience treatments and outcomes different from the ones you desire. Placing all your hope in a specific treatment path or result can cause fear of other options to grow, affecting your ability to make critical treatment decisions in the future. This can have serious implications for your child’s welfare, and your own psychological wellbeing.
For example, if initial eye salvage treatment fails, a parent who has put all hope in that therapy or saving sight may press for further eye-salvage therapy, even if enucleation is recommended to prevent the cancer spreading. If Intra-Arterial Chemotherapy is strongly advised or desired to avoid the side effects of systemic chemotherapy, parents may struggle more with the complex experience of systemic chemotherapy, should it be needed later in eye-salvage or to protect the child’s life after enucleation.
To avoid disappointment with the outcome of treatment, try to stay focused on what is best for your child’s overall wellbeing, and remember that further treatment with other approaches may be needed. For example, when undertaking eye-salvage therapy, it will be very important to understand that enucleation remains a possibility, if needed to protect your child’s life.