There is no safe way to surgically remove retinoblastoma without removing the entire eye.
Enucleation is the surgical removal of the entire eye. This surgery will only be done after full discussion with you.
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.
When Enucleation is Recommended
Surgery is the best treatment when:
only one eye is affected, unless tumours are small (IIRC group A, B and C eyes have good chance of salvage with chemotherapy and focal therapy);
a tumour is large and there is no hope of saving useful vision;
the cancer threatens, or has already spread to, the optic nerve, outer layers of the eye (choroid and sclera) front of the eye (anterior chamber);
pressure in the eye is high (glaucoma), indicating high risk tumour in the front part of the eye;
bleeding or cataract prevents thorough examination of the retina, with a risk that new tumour activity will grow undetected.
other treatments have failed to destroy the cancer;
no other treatment is available.
80-90% of children lose at least one eye. Surgery is done to prevent cancer killing the child.
Retinoblastoma that spreads beyond the eye has very poor chance of cure, even with the most sophisticated intensive therapies.
Primary Treatment for Unilateral Retinoblastoma
When a child has a large tumour in only one eye, with normal vision in the other, enucleation is the best option to protect the whole child. Eye salvage therapy is prolonged and intensive, with many unpleasant side effects and potential complications, and minimal chance of successfully saving vision or preserving the eye.
These aggressive treatments can hinder natural child development and have lasting negative physical and emotional effects. Surgery allows the child to heal quickly and move forward in life, cancer-free. The cosmetic outcome of immediate enucleation with a good artificial eye is also usually better than months or years of invasive therapies.
Many parents seek a second opinion before surgery, and this is very reasonable. Always seek a second opinion with the full involvement of your child’s doctors as they will be able to support you in this process and help prevent unnecessary delays in care.
Do not delay treatment more than a week or two, or keep seeking second opinions hoping you will find an alternative treatment. Your child’s cancer is potentially life threatening. The longer you delay, the greater the risk becomes. If two doctors agree on the proposed surgery, please respect their opinion – they are trying to save your child’s life.
You have the right to refuse surgery. However, if the doctors feel this puts your child’s life at risk, they may request a court order for treatment. Your child’s welfare as a complete person is paramount. If legal intervention is sought, both you and the doctors will have the opportunity to share your concerns during the court’s decision making process.
Not An Easy Decision
Even though surgery is the best lifesaving care for most children, this is often not an easy decision for parents and extended family. The Rb team at St. Jude Children’s Research Hospital, together with some of their patient families and survivors, made this video to help other families on the decision making process and journey to recovery.
Questions to Ask the Ophthalmologist
Why is enucleation being suggested?
Are there any other options to preserve my child’s sight?
Do these options pose a risk to my child’s life?
When will the surgery take place?
How long will the surgery take?
How many eyes with retinoblastoma have you removed?