Questions to Ask the Medical Team and Yourself
Asking questions helps us gather information and make informed decisions.
Throughout this Retinoblastoma Resource, you will find lists of questions to ask the medical team and yourselves when making decisions about your child’s care. Following requests from some parents, we have compiled this page with signposts to the individual lists.
Finding Your Medical Team
Your child should be treated by an ophthalmologist (eye doctor) and oncologist (cancer doctor) who are experienced in treating retinoblastoma and work together to plan and deliver treatment. Always ask the doctors to clarify what experience they have in treating children with retinoblastoma.
Medical Procedures and Informed Consent
Before a procedure, you will be asked to sign a consent form, giving permission for it to be done. Informed consent means you clearly understand about the procedure, why it’s being done, what it involves, its potential risks, side effects, and benefits, when you sign the form.
Clinical Trials and Informed Consent
Informed Consent means you fully understand the tests, therapy, follow-up, risks and benefits before allowing your child to receive the treatment.
When your child is receiving treatment as part of clinical research, you have a right to see and keep a copy of the complete protocol document before signing the informed consent form.
To fully understand the clinical trial treatment proposed for your child, here are some valuable questions to ask the investigating doctor or research assistant. This list of questions covers study design, tests, treatment and follow up, and administration.
When your child’s doctor recommends a medical intervention of any kind, always ask questions to help you assess the options.
Important questions must be put to the doctors and those helping you gain visas, travel and housing. You must also answer your own difficult questions to ensure your child’s life is protected, along with the wellbeing and unity of your entire family.
Enucleation – Making the Decision
Recommendation to remove your child’s eye will be based on tumour size and position, risk to life, age, health of the other eye, and chance of cure with other therapies. Surgery will only be done after full discussion with you
Chemotherapy is the most common non-surgical therapy for retinoblastoma. Anti-cancer medications are given either to shrink the tumour to enable focal therapy, or because cancer has spread outside the eye or has high risk of relapse after enucleation surgery. Several chemotherapy drugs are used in combination to treat retinoblastoma, and treatment is given over varying timescales, depending on the reason for treatment.
Focal treatments are laser, cryotherapy, chemotherapy and brachytherapy (radioactive plaque) delivered directly to a specific part of the eye or to tissues surrounding it. These procedures are done in the operating room during an Examination Under Anaesthetic (EUA). Repeated treatments are usually needed to destroy tumours.
These treatments may be used separately or in combination with other therapies, such as systemic chemotherapy. As primary treatment, they are effective only for small tumours that do not threaten vision.
Systematic chemotherapy may be given to shrink tumours so they can be “finished off” with focal therapies. Chemotherapy alone rarely cures intraocular tumours. Good outcomes are achieved by following chemotherapy with laser and/or cryotherapy, repeated at monthly intervals until the tumour is a flat scar that remains inactive.
Both laser and cryotherapy are important to destroy recurrent growth of tumours when they are still small.
Each page detailing the individual focal therapies includes a list of questions to ask the doctor.
Focused beams of light are used to kill small tumours, both by destroying their blood supply and directly killing the tumour cells
Nitrous oxide is used to cool a probe outside the eye, at the site of the tumour. This freezing treatment is best for small tumours in the periphery of the retina.
Anti-cancer drugs can be injected into the tissues or space surrounding the eye.
Chemotherapy can be injected directly into the fluid middle of the eye to treat seeds, only when the main tumour has been controlled with other therapies.
Brachytherapy (Plaque) and Radiotherapy
High-energy rays are targeted at tumours to destroy cancerous cells. Radioactive plaque and external beam radiotherapy can be used to treat retinoblastoma. These questions will help you discuss the proposed treatment with your child’s doctors so you can make fully informed decisions about therapy and how to support your child.
Stem Cell and Bone Marrow Transplant
This is an intensive therapy for trilateral and extraocular retinoblastoma. After the child is given super high dose chemotherapy, stem cells are infused to rebuild the bone marrow. Transplant is a complex procedure with significant risks and potential complications, and a long recovery time. Ask all the questions you need to before giving consent.