Retinoblastoma

[Jane0506qz]

Hi,

I just wondered if anyone had any experience with retinoblastoma and could offer me any advice / support.

I had noticed a glow in one picture of my 12 week old baby and therefore took her to the doctors. He did the red reflex test and said it was red but in both eyes there was a small patch which reflected back more orange toned than fully red.

He said this could be down to a number of things- it could just be the shape of her eyes, or blood vessels. The worst case he said is that it could be cancer behind her eyes. He did say it didn’t look like it in his opinion but said that he wanted to refer us to a specisialist ASAP as she does also have two different sized pupils and has since birth.

I’m worried sick and can’t stop crying when I look at her thinking my poor baby could have cancer at just 12 weeks old.

I just wanted to know if anyone else had ever experienced something similar and could offer me any advice?

Yes, I do. I work in oncology. When is your specialist appointment?

Remember this is the worst case scenario : retinoblastoma is a highly treatable cancer with a more than 95% success rate. I think the worst part is waiting for the initial appointment.

@Cinderellashoes we are not sure when her appointment will be. They said they will call tomorrow morning to let us know. I’m going to be pushing for it to be as soon as possible as just want to know as soon as possible if it is something so we can get her the help she needs

Have you had any experience with the red reflex showing orange at one angle in both eyes and it not being cancer ? Not sure if it’s common for this to happen or not.

Thanks so much

Hi, first off I can understand the panic feeling but please don't.

I had abnormal red reflex test as an infant, for me it was due to something called a coloboma on my retina. It's a small hole where that bit never formed properly.

It's nothing, ironically the other eye that passed the red reflex test has a coloboma on the optic disc which has caused me some problems with my vision but nothing that's stopped me from doing all the normal things.

Cancer is basically the worst outcome, there are loads of other reasons for the result your optician saw most of which are easily resolved or minimal in impact.

Dont jump ahead
You dont have a cancer diagnosis at this point.
It could be something benign.
Hope for the best.
Keep smiling to her.