A confusing range of treatment options exist for retinoblastoma. They differ in potential for cure, risk to the child and impact on the whole child depending on the number, size and position of tumours in the eye, whether both eyes are affected, and the age and overall health of the child.
When parents lack clear information about retinoblastoma and its treatments, they are unable to make fully informed decisions about their child’s care.
40% of survivors have a genetic mutation that carries a life-long risk of other cancers, and their children may develop eye cancer. When they do not have solid information, they are less able to advocate for themselves and their children, and less likely to receive appropriate medical care.
When friends and family do not understand about cancer, its treatment and effects, they are less able to support the family in crisis. Their words and actions may unintentionally make the situation worse, and even increase stigma that risks the child’s life.
Primary health workers are often not aware of the early signs of childhood eye cancer or the life-long risks and related cancers affecting adults who had retinoblastoma. This lack of knowledge leads to preventable delays in diagnosis and vital treatment.
I feel our doctor told us very little about the treatments and what we could expect. The information you provide was exactly what we needed and right at our fingertips when we needed it. You helped us ask the right questions and feel more confident that our choices were good for our little girl. We were more prepared for what lay ahead and that took much of our fear away. Thank you for that gift of deeper peace.
What an education! We are so blessed that you have made awareness materials in Russian. Our daughter has a chance of life now because of it.
I am 28 and I’m embarrassed to say that I had no idea the eye cancer I had in my left eye when I was seven months old could put my babies at risk or give me another cancer. I was shocked to discover this when I met someone else who had unilateral Rb and a child with Rb, especially because I am pregnant. I googled for more info and found your brilliant resource. Reading it was very hard but I learned so much and feel far more informed. I arranged genetic testing and we know now what to do to protect our baby. You can’t know what it means to me and my husband that you made this information available – I dread to think what might have happened to our baby if I hadn’t known, hadn’t had that info. No one in my care team was concerned about it when we went through my medical history…