Diagnosing retinoblastoma
If you’re worried that your child is showing a symptom of retinoblastoma take them to your GP, a local optician/optometrist or an ophthalmology (eye specialist) department to have their eyes examined as soon as possible.
Even if you have spoken to someone on the phone, it is important that your child is seen in person, as the healthcare professional will need to examine their eyes carefully by carrying out tests which are not possible on a video call.
Although optometrists are trained to examine children of all ages, some may choose not to test babies and younger children, so you may have to try a few before finding one happy to check your child’s eyes for you. Some ophthalmology / eye departments have a walk-in or A&E clinic, but others will need a referral from your GP.
Retinoblastoma is a very rare condition, so you may need to explain to the medical professional you see that you are concerned you’ve seen a sign in your child’s eye(s) or in a photo, and that you would like them to be fully tested in order to rule this out.
1.
What to take with you
Show the healthcare professional our signs and symptoms web page. If you have any unusual photos of your child’s eye/s, take these with you. You can also show the healthcare professional our fundal (red) reflex test poster which explains how a professional should check children’s eyes for retinoblastoma.
2.
At your appointment
At your appointment, your health professional should examine your child’s eyes in a darkened room using a medical torch to check the retina at the back of both eyes. If they have any concerns they should refer your child urgently (within two weeks) to the local ophthalmology department for further investigation.
If you feel you are being delayed at any stage during the process or you don’t feel fully reassured that retinoblastoma has been ruled out, then ask for a second opinion until you are satisfied or have received an urgent referral.
3.
What happens next?
At the ophthalmology department, your child will undergo a thorough eye examination. This may involve:
- Examination by an ophthalmologist (consultant eye doctor/surgeon) or paediatric (children’s) ophthalmologist
- Fundal test: Eye drops to make the pupil larger for a better view of the back of the eye.
- Ultrasound: Gel is applied to the eyelid, and a painless probe scans the eye
- Eye pressure check: This might involve a puff of air or eye drops
- Anaesthetic: This may be done in some cases for a better look at the retina. This would have to be done on a day care ward, but this will be explained to you if it’s required.
- Vision test
4.
If retinoblastoma is suspected
If retinoblastoma is suspected, an urgent referral will be made for your child to be seen at one of the two retinoblastoma treatment centres in the UK – Birmingham Women’s and Children’s Hospital or the Royal London Hospital.
An appointment will be made for your child to be seen within a week and the retinoblastoma service team will contact you, usually by telephone, before your appointment. Your child will need a general anaesthetic at this stage so that their eyes can be thoroughly checked to confirm or rule out retinoblastoma.
Just diagnosed
If you’ve just been given the news that your child has retinoblastoma, you may find our just diagnosed article useful.