The Childhood Eye Cancer Trust (CHECT) provides support to people with many different associations with retinoblastoma. Some people had the condition as a child and are now adults, others have a relative who has been affected. CHECT aims to support adults who had Rb as a child by providing useful, accurate and up to date information which is available here on our website. This is available in the section 'Adults after Rb' and is designed specifically for adults.
The Childhood Eye Cancer Trust can also play a part in helping members to get the right treatment from the health service. The trust knows that many people personally affected by Rb will, as they become adults, need access to genetic counselling and oncology follow up clinics. They may also need understanding and support from their GP when they raise any concerns over late effects of treatment and an increased risk of second primary cancers. CHECT is working to increase the knowledge and awareness of front line healthcare professionals regarding these issues but if you find you need to give your own GP more information on these subjects then you might consider giving them a copy of the following articles:
All three were written to increase awareness with medical professionals of the late affects of retinoblastoma, it’s treatment and the need for genetic counselling in some cases.
Carter, J (2010) Supporting patients after retinoblastoma. Practice Nursing 21(1): 38-40.
Carter, J (2009) Retinoblastoma - The issues faced by adults who had retinoblastoma as a child, GP Magazine 17/04/09: 41-43.
Carter, J (2011) Retinoblastoma - The issues faced by adults who had retinoblastoma as a child, GP [online]
Avaliable at: http://www.gponline.com/Clinical/article/897922/Retinoblastoma/ [Accessed 14/07/2001]
Halford, L et al. (2008) Retinoblastoma for life. Focus - Royal College of Ophthalmologists Summer: 5-6.
Please click on the links below for various sections of the website.