Treatment Decision Making Guide
Step 1 – Acknowledge Your Thoughts and Feelings
Retinoblastoma is a rare and complex cancer that most parents have never heard of before their child’s diagnosis. Making treatment decisions can be especially hard in the days after diagnosis, relapse, or receiving high-risk pathology, when removal of an eye is being considered, or when the potential to save the child’s life is remote.
The goal of both parents and medical professionals must always be to do what is best for the whole child, prioritising their life and wellbeing above everything else. Sometimes, the best decision is to remove a dangerous eye to protect the child’s life, or transition from life-saving treatment to life-enhancing palliative care that allows the child to die with as much comfort and dignity as possible.
Many parents experience intense emotions while making treatment decisions, from sadness, anger, guilt, and grief, to fear and anxiety about the unknown. Anxious thoughts bouncing around your mind may include:
- How did this happen?
- Was this my fault?
- I have to be able to tell my child “We did everything possible to save your eye”.
- I’m terrified of the chemo side effects / seeing my child without their real eye / blindness / raising a blind child.
- I can’t condemn my child to a life with reduced / no sight.
- What will the treatment / side effects be like?
- Is the treatment safe for my child? What if the cancer spreads?
- How will this impact on their development, education, and future life?
- Will they be OK with my choice when they are older?
- How will this affect our family, work or life generally?
- How will I tell my partner / other children / parents / other relatives / boss / co-workers?
- How will we pay for this?
- How will we get through this?
All of these thoughts are very natural and understandable. Parents and caregivers often worry about making the wrong decision, or that it will be their fault if the treatment they select fails and/or has complications, or the cancer spreads. These concerns are normal – we worry because we love and care deeply. You only want the very best for your child.
Try to give less energy to small daily decisions, so you have more mental space to address your emotions and focus on the big treatment decisions. Wherever possible, turn these repeated decisions into a routine you are comfortable with, or give that choice to someone else.
For example, limit your options by choosing to wear a specific colour or eat a specific type of food. Or be willing to take the first available option, and move on with your day. They may seem trivial, but eliminating those micro-stressors can have a significant impact.
It is vital to seek the emotional, psychological, spiritual and practical support you need to work through your strong emotions and concerns. When you have a calmer mind, you will be more able to gather all the information you need, and sift through it with greater clarity, to make effective treatment decisions.