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Signs and Symptoms of RetinoblastomaWorried you have seen a sign of RetinoblastomaRetinoblastoma is a rare type of eye cancer which mainly affects children under 5 years of age. Spotting one of the signs or symptoms of retinoblastoma can be a scary thought for any parent or relative, but finding out about what to do next can help to ensure any symptoms are checked out quickly and your child can receive any treatment they may need.Retinoblastoma is very rare; only about 50 children are diagnosed with the condition each year in Great Britain. It is also very treatable, especially if caught early. Around 98% of children are successfully treated. The signs of retinoblastoma which are described below can also be caused by other less severe conditions and can sometimes be due to the angle of the light when a photograph is taken. The most important thing to do if you see any of these symptoms is to get your child's eyes examined. It is very important to do this quickly just in case your child needs to start treatment. The signs to look out forA white reflex: A white reflexion can be seen in a photograph where the flash has been used. Often one eye will have "red eye" which is normal but the other eye may look white, yellow or orange. This may be seen in just one or many photographs of the child. A white reflex may also be seen when the child is in artificial light or a darkish room. Some parents say that it looks like a cat's eye caught in light or that they think they can see the back of their child's eye, other parents say it looks like jelly. This white reflex may only be seen every so often but in some cases it is present all the time.  An absence of "red eye" in flash photographs: In a photograph where one eye has "red eye" (which is normal) the other eye may look black or looks "wrong". This can also be a sign that something is not right.  A squint: A squint can be a sign of retinoblastoma, although a squint can also be nothing more than a squint. It is always worth having it checked out quickly just to make sure. Some people call a squint a "lazy eye"; it is where one or both eyes look in or out.  Deterioration in vision: A child may have deterioration in their vision or they may have had poor vision from birth. You may notice that your child does not focus or fix & follow as well as other children or babies of the same age. Red, sore or swollen eye: A child's eye may become very red and enflamed for no reason. This sign is usually linked with other signs. A change in colour to the iris: The iris, the coloured part of the eye, can sometimes change colour, sometimes only in one area. If the child is aged five or younger and you have noticed one or more of the signs above always take them to have their eyes examined. Who to seeIf you are concerned you have noticed a sign of retinoblastoma we recommend you take your child to the General Practitioner (GP) or a local Optician to have their eyes examined. If you have any unusual photos of the eye/s it is also a good idea to take these with you, along with a copy of our 'Awareness Leaflet' and our 'See Red' poster. Click here to download these so you can take them along to your appointment.  Awareness leaflet.See Red poster. These things may help you to explain why you are concerned as retinoblastoma is rare and some GP's or Optician's may not have seen any cases of it before. At your appointment you health professional will carry out a 'Red Reflex Test'. This is where in a darkened room; they will use a medical torch (ophthalmoscope) to check the retinas at the back of the eyes. They will have a good look at the back of both eyes to check for anything unusual. If they have any concerns they will refer your child quickly to a local ophthalmology (eye) department for further investigation. If you are unable to get an appointment with your GP or Optician quickly some regional ophthalmology departments have a walk-in clinic where you don't need to make an appointment. We do not recommend you go to the Accident and Emergency department as they rarely have a doctor on who is familiar with looking at the retinas in the back of the eyes. If you would like to talk to someone about the signs & symptoms of retinoblastoma please contact our support worker Juliette Carter either on Tel: 020 7377 5578 or via email juliette.carter@chect.org.uk Referred for further examinationIf the GP or Optician your child first saw was concerned your child might have retinoblastoma the child will be referred to be seen at a regional ophthalmology (eye) department. This referral will be urgent and the child will be seen within 1 to 7 days. At the regional ophthalmology (eye) department your child may be seen by an Ophthalmologist and is some cases a Children's Ophthalmologist (An Ophthalmologist is a Consultant eye doctor/surgeon). The Ophthalmologist may do another Red Reflex Test for the child. They will use special eye drops which increase the size of the pupil so that they can have a really good look at the retinas at the back of the eyes. Some Ophthalmologists will choose to do an ultrasound to help them make a diagnosis. This involves a gel being put on the outside of the eyelid and then an ultrasound probe placed onto the eyelid. This allows the ophthalmologist to scan the eye. The pressure in your child's eye may also be checked. This can be done in two ways, either a special puffer is used to puff air directly at the eye and the response can tell the Ophthalmologist if there is increased pressure in the eye, alternatively yellow eye drops can be administered and then an instrument with a blue light is used to touch the front of the eye and the pressure is read using this tool. In some cases the Ophthalmologist may decide the child needs to be checked whilst under anaesthetic so that they can have a better look at the retina. This will have to be done on a day care ward but the appointment and procedure will be explained to you. In addition to these tests you child may also have a test to see if glasses are required. This will be done by an optician. After your child has been seen by the Ophthalmologist and all the necessary tests have been done the Ophthalmologist will discuss with you what they think is wrong. If your child has nothing wrong with their eyes and vision then they will be discharged. If the Ophthalmologist has identified an eye condition they will give you the diagnosis and explain what treatments are necessary. If the Ophthalmologist suspects your child does have retinoblastoma they will make an urgent referral for them to be seen at one of the two retinoblastoma services in the UK, The Royal London Hospital or Birmingham Children's Hospital. An appointment will be made for your child to be seen within a week and the retinoblastoma service professionals will contact you before your appointment. If you would like more support or information in relation to retinoblastoma then please contact our support worker Juliette Carter either via Tel: 0207 377 5578 or email juliette.carter@chect.org.uk If your child is diagnosed with retinoblastoma there are a variety of different treatments that are available, each child is judged on an individual basis and the treatment will be tailored specifically to their needs. Your consultant will discuss this fully with you at diagnosis. |
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