By Raechel Burgett
months before my 30th birthday I found out I had a seven-year life expectancy.
In August, 2016, I was told I had a brain tumour. Ten days later I was in surgery to have it removed. Seven days after that I found out it was a grade 3 oligoastrocytoma – not the worst tumour, but definitely not the best either.
Unfortunately, the surgeon wasn’t able to remove all of my tumour without risking permanent disability. Since my surgery, I have undergone six weeks of concurrent radiotherapy and chemotherapy, to be followed by six months of chemotherapy. I am yet to complete this.
If my oncologist is correct, and I only have seven years left to live, I won’t see either of my children make it to high school. I’m afraid to think about their graduations, wedding days, and children.
Prior to my diagnosis, I had never met anyone with brain cancer. Now I know that someone in Australia is diagnosed every five hours, and someone dies from it every seven hours. With greater public awareness and earlier diagnosis mean survival rates could be increased. If I (or Google for that matter) had known that my episodes of unilateral pins and needles were seizures and not a ‘dead leg’, then I would have sought medical advice sooner, and perhaps my surgery would have been more successful.
The morning of my surgery I had post-it notes all over my hospital bed reminding my surgeon to keep extra samples of my tumour. I had read that DNA sequencing is the most promising area of research into brain cancer, and decided I’d submit my tumour for clinical trials with the hope of getting a more targeted treatment.
I’ve also read that $500 funds a brain cancer researcher in a lab for two days. It turns out that only terminal brain cancer patients can enter these trials. Further reading led me to enquire about a test that can be done on my tumour sample, which can indicate how sensitive my cancer is to the prescribed chemotherapy. When I asked my oncologist if I could have the test performed he told me there was no point. If the test showed my cancer is unresponsive to this chemotherapy then they have nothing better to offer me. It would only lead me to be disheartened about my treatment. What is the point of having this test if it doesn’t lead to any changes in treatment? Further research into varied and customised treatment is obviously necessary.
With greater funding, both federal and non-government, more individuals like myself would have the opportunity of a longer life. Why is it that names like ‘The Leukaemia Foundation’ and the ‘Pink Ribbon Campaign’ are readily recognised by most adults, but no brain cancer organisations are? We desperately need money if we hope to make a difference when it comes to brain cancer. Money for research. Money for public awareness. Money for support.
It’s unlikely that current research will result in any significant changes to my treatment outcome and prognosis. However, with adequate funding and increased awareness perhaps some of the more than 1600 Australians who are diagnosed every year with brain cancer may defy current survival rates.
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