Retinoblastoma

Hi 

So sorry to see you joining us and reading about your sons Retinoblastoma.

According to Cancer Research UK (CRUK) there are only 2 centres that specialise in treating this - The Royal London Hospital and Birmingham Childrens Hospital (unless more have been assigned recently)

Although this can be found in older children, unfortunately it is mostly associated with youngsters.

There is this Macmillan Retinoblastoma info page produced alongside CCLG the children's cancer and leukaemia trust.

There is also the Childrens Retinoblastoma Org UK (CHECT) charity website you can have a look through.

Although there is support here for family & friends most of the childhood cancers have better, more specific support sites like CCLG / CHECT and CLIC Sargent etc

Macmillan is great for adult cancer support but for most children's cancers only has general information and links to more suitable support organisations - who to be honest have more comprehensive specialist knowledge in their specific areas of expertise.

I have carried out a Macmillan forum search and sorry to say there are very few Retinoblastoma messages to pass on.

Hopefully someone may reply, but fingers crossed you can find the information you deserve on the CHECT support site.

Hope this is of some help at what must be a tough time for you all, G n' J