The link between retinoblastoma and secondary cancers - new study

The January 3 issue of the Journal of the National Cancer Institute contains the results of a new study examining the links between hereditary retinoblastoma and secondary cancers. This article emphasises the need for survivors of retinoblastoma to be monitored for specific future cancers. This study focuses on the increased risk of soft tissue sarcomas, particularly where the patient has had radiotherapy. For people treated by other therapies, there is not such a risk.
You can read a news release on the study here
I no longer feel alarmed when I come across research such as this. My belief is that it is better to be informed, rather than to be totally unaware of what might happen to my health in the future.
This subject brings me to a later chapter in my book, ‘Beyond the Red Door’, so I’m jumping ahead. I was in my early thirties when I first discovered the connection between retinoblastoma and secondary cancers. How did I find out? By chance, while I was surfing the internet. Naturally, this sent me on a hunt for more information, and to establish a monitoring system for myself, to alert me to any signs of developing tumours.
This is the ticking time bomb I refer to at the end of chapter one.
Why didn’t my parents or I know about it? In Australia, anyway, the same response seems to come up: because doctors dont’ want to alarm their patients. When I started on my mission for the truth, I came across this sort of response: “You’ve got just as much chance of developing cancer as anybody else - why worry?”
Not true. Specialists in the field in other countries, such as in America and the UK, don’t hold back on stating that the risks increase as retinoblastoma survivors get older. Together with this information are brochures and fact sheets on how adult patients can monitor themselves, and what to look for.
As I said, learning about the types of cancers I could get, and I emphasise could, doesn’t depress me. The advice I’ve been given is to watch out for melanomas (skin cancers) and breast cancer, as well as cancer in the radiotherapy site. Reading this study has extended the list of possible secondary sites for me. But forewarned is forearmed. We all need to watch our health…retinoblastoma survivors just have to watch a little bit more closely.

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