Retinoblastoma-Anyone any experience of this?

[Whooosh]

My friend's dd aged 8mts has been diagnosed with this in both eyes.
She has no sight in one eye and is limited in the other.
They are seeing the chemo specialist today but I just wondered if anyone had been through this and what the outcome was?

The first two specialists said she would have to have one eye removed-the third has said not-well not yet at least.

She is such a lovely baby and the thought of what she is going to have to go through is heartbreaking.

No first hand knowledge but, little boy in my street has same problem. He's had one eye removed and has fair sight in other. He and his family have coped remarkably. He had chemo etc and i think future looks good for him. Hope all works out well for your friend.

Poor little thing! Removing the eye used to always be necessary but nowadays the tumour can be shrunk by attaching a "plate" to it which delivers radiotherapy. This is often successful but I think it does depend on how advanced the tumour is.

Still waiting to hear how they got on today.I think losing sight in one eye,if it saves teh other and indeed her life would be manageable-I just can't imagine what it would be like to lose both.

They are desperate to know if the sight she has lost in one eye can be restored if the tumours are removed....

Whoosh, I would think that if some of the surgeons are of the opinion that the eye should be removed it is unlikely that there would be any useful vision left in that eye. But each case is different so I wouldn't like to give the impression that there is no hope at all for the LO. How was it diagnosed? Was there a white pupil in photographs?

Don't know loads about this but priority must be to save life not sight. You would be amazed at how well young children can adapt to things. Might be worth looking up a Prof B De Marco based in Liverpool. He's not a paediatric specialist but is the top dog on ocular radiotherapy I believe.

Thanks for that Heavy-that is really useful.

My friend had for some time been convinced something "wasn't quite right" with one of her eyes-thought maybe a squint or something.HV kept dismissing it.
Went to Doctor who said it was a lazy eye and covered it.There was no improvement obviously so they persued it and LO was diagnosed last week.

Hi Whoosh,

sounds terrible, poor girl.

I haven't any experience of that, but if it's any help, I had an accident when I was 3 and lost the sight in my left eye, and am now very short sighted in my right eye. I've never known any different and I see fine with a contact in right eye, I can drive and everything so it's never really been a problem.

I hope she's alright, it's awful when there's a problem with a baby's health.

Any news on the LO, Whoosh?

Bohemianbint-that is encouraging-sounds like you cope amazingly well

CHip-nothing today as have been madly busy and wanted to give them space.Will speak to friend tomorrow for update and report back....

Not the same as she was much older (40s) but my colleague had this. She did have the eye removed (her other eye is thankfully fine) and she has a glass eye but it is amazing. It is handpainted so it matches the other eye perfectly and it tracks so moves in the same direction as her real eye.

Sorry to hear this.My aunts niece had this as a small child & had 1 eye removed.She is absolutely fine & married with a baby now.

Wishing your friends'dd all the best.
FG