Why Senator Catryna Bilyk is Walking 4 Brain Cancer

August 4, 2020

By Senator Catryna Bilyk

I had recurring headaches for about ten years leading up to my brain cancer diagnosis. I reported this to my GP on many occasions and each time was told that it was a result of stress and working long hours or a virus. During that decade I worked as a union industrial officer and as a Ministerial adviser. Both were quite challenging and demanding jobs, but not unusually stressful.

In November 2007, I was elected to the Australian Senate and half way through the seven-month wait for my term to start I finally discovered the cause of my headaches. After four days of violent illness when I could barely lift my head I became delirious. My husband rushed me to the hospital, and I have no memory of the next three days.

I was diagnosed with two tumours in my brain. One was the size of a golf ball and was pressing against my brain stem, blocking the brain fluid from going around in my skull. Without an exit, the fluid was pooling on top of my brain—a circumstance known as hydrocephalus—forcing my brain to expand. It was also increasing the pressure in my skull to a dangerous level.

The other tumour was on the other side of my skull. It was smaller but still had the same damaging potential as its larger twin.

I underwent two surgeries, five days apart. The first surgery was to have a drain put into my skull to drain the excess fluid, which enabled the second surgery to remove the tumours.

In 2008, Senator Catryna Bilyk underwent multiple surgeries to remove two brain tumours.

When I regained consciousness, after what my surgeon described to me as textbook surgery, I was told the good news—both of the tumours were benign, and both had been successfully removed.

Three months later I was able to take up my Senate position representing the people of Tasmania.

Since my surgery I have undergone regular scans to ensure that the tumour does not recur. These checks have become less and less frequent, and I have effectively been given the all clear.

I’m lucky that my brain cancer experience was less traumatic than the agonising journey other survivors have had. However, until I was given the news that I was in the clear, the fear and uncertainty was overwhelming. It’s not commonly understood that, while less dangerous than malignant forms of the disease, benign brain tumours can be deadly and kill thousands of Australians every year.

Throughout this whole experience, I cannot praise enough the dedication and professionalism of the Royal Hobart Hospital staff, who provided the very best of care and attention.

While it was a frightening experience, not just for me but for my family and friends, the best thing that has come out of my ordeal is that it has kick-started my advocacy for fighting brain cancer. I have organised events, including four annual Walk4BrainCancer fundraisers, that have raised almost $200,000 for Cure Brain Cancer Foundation. The sixth Walk4BrainCancer Tasmania will be held this Sunday. This work has allowed me to meet with researchers, patient advocates, patients and their families.

The sixth Walk4BrainCancer Tasmania will take place Sunday, November 3 at Dru Point Bicentennial Park in Margate.

For many years, I have been a lone voice in Parliament on the need to focus on improving brain cancer survival. I have spoken on the subject in the Senate many times, and established the cross-party Brain Cancer and Tumour Awareness Group (BC&TAG).

I am proud to have pushed for the establishment of, and chaired, a Senate inquiry into cancers with low survival rates, which heard from advocacy groups, researchers and government agencies. The inquiry also heard heartbreaking stories of people who had died from brain cancer, and there were several hearings where there wasn’t a dry eye in the room, even from the participating senators and Committee staff.

Following the Senate inquiry we have seen the establishment of the $100 million Australian Brain Cancer Mission, and the Medical Research Future Fund’s Low Survival Cancers and Diseases (LSCD) Grant. The LSCD grant guidelines acknowledge that the grant was established in direct response to the Senate inquiry.

Through the fundraising events I have organised, the Senate inquiry and my involvement in this issue, I have had hundreds of conversations with people whose friends and family members, including children, have died of brain cancers. These tragic stories have fuelled my motivation to be an advocate for more research funding and collaboration, and to improve survival rates.

I know with effort that improving brain cancer survival is possible, because we have seen what effect advocacy and fundraising have had on the survival rates of other forms of cancer. If the survival rate for childhood leukaemia, for example, can be improved from 10% to 90% in the space of a few decades, there is no reason why a similar effort can’t do the same for brain cancer.

On behalf of all the patients who have experience the fear and uncertainty that comes with a brain cancer diagnosis, and all the families who have lost loved ones to this terrible disease, I am continuing to raise funds, to raise the issue in the Senate, and to fight for better treatments.

This is why I’m Walking4BrainCancer in Tasmania on Sunday, November 3.