Ben Underwood, aged 15 years, lost both his eyes to retinoblastoma when he was three. Now he is battling cancer again, this time, a tumour in his sinus region. The doctors can’t tell if the cancer is a secondary from the retinoblastoma, or if it has occurred as a result of the radiotherapy treatment used to erradicate the retinoblastoma tumours.

But Ben isn’t letting this major change in his health get him down. Living in Sacramento, Ben has become famous for being able to “see through sound”. He refuses to use a white stick to move around, preferring clicking with his tongue and using echolocation to navigate around his environment. Ben is able to ride a bike, skateboard and play basketball, despite being totally blind.

His amazing abilities have led to him travelling extensively, giving talks about his life and meeting famous people.

Now he is undergoing chemotherapy and suffering from its side-effects. Although his prognosis is not clear, he has one vital thing on his side: his positive attitude.

To read Ben’s inspiring story, click here

I gave Chapter 11 of ‘Beyond the Red Door’ the title of ‘Time Bomb’ for a good reason. It wasn’t until I was about thirty-two years old before I discovered the links retinoblastoma has with secondary cancer later in life. I felt as though I’d been living with a time bomb that neither my parents nor I was aware existed.

I’d known that radiotherapy as a treatment for cancer had its own late effect concerns in that it could cause the disease it had originally eliminated. But it was only through some chance events and encounters that I discovered that retinoblastoma also had links with secondary cancers. At first, I thought bone cancer was the one and only concern, and that once I’d finished growing, this wouldn’t be a problem. But my inadvertent wanderings led me to find out more, and I knew it couldn’t stop there.

In this chapter, I describe what I found out, the attitudes I encountered, and how I resolved my new-found situation. I’d been severely shaken by this new information. It felt as though my life had been turned upside down. It was crunch time for me, and I had to make a choice.

You can read all about my struggles in this chapter in my book

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.

I’ve given Chapter Four of ‘Beyond the Red Door’ the title of Invisible Scars. In this chapter, I describe my struggles with that difficult time we all go through - adolescence.
Just being a teenager is hard enough to survive with the emphasis on fitting in, looking good, and knowing yourself. Add to that the extra pressures of having a disability, which immediately sets you apart from the rest, and being adopted and without a solid foundation to fall back on.
These were the issues I had to deal with as a teenager going through high school. In my transition to high school, I lost the strong and confident qualities I had as a child. It was as though they had been sucked away from me. I was left with low self-esteem, no confidence and no idea of who I really was. My adoption issues came to the fore without any prompting, making me feel different because I didn’t know anything about my past. And this was on top of feeling different because I was vision impaired.
At this time, too, the long term effects of the radiotherapy I had as a baby started to show themselves. This meant frightening vision changes, many treatments and surgery with an uncertain result.
How do kids ride the rough times in adolescence? The answer to this depends on a lot of things. Read how I survived the bullying and teasing and depression I suffered in my teenage years.
Looking back now, I can see how I built my resilience. With this knowledge, I hope to help teenagers today to build their own resilience and survive adolescence.