A routine MRI scan for my pre-existing Multiple Sclerosis (MS) in 2011 showed a small mass in the clivus area. I wasn't informed at the time; it was only noted down by the radiographers. Fast forward two years to 2013, and another routine MRI for my MS confirmed that the mass was still there and slightly larger than it had been on the 2011 scan. My neurologist then referred me to a neurosurgeon. After tests, scans, and seeing other specialists, it was confirmed that I had a clival chordoma.
From the beginning, very few neurologists, neurosurgeons, and specialists had even heard of chordoma. Even fewer had treated it through surgery or radiotherapy. Finding a specialist in Australia, let alone in Melbourne, who knew how to treat chordoma was difficult. It has felt rather isolating not having access to second opinions and having to put my full trust in the specialists I came across.
Travelling overseas for surgery or treatment and funding it ourselves was not a viable option, and at the time we weren't aware of any financial support avenues. It was only during my second round of radiotherapy in 2023 that we learned about funding through the Medical Treatment Overseas Program (MTOP). We went down the route of having the Bragg Centre in Adelaide assess my case, but it was determined that proton beam therapy would not provide any further benefit compared with the stereotactic radiation available to me in Melbourne, based on the location of my chordoma and my past history of radiation.
Looking back, it would have been helpful if the Bragg Centre had existed in 2016, during my first round of radiotherapy, so that I could have had all of my radiation options assessed.
It is hard enough to live with one incurable medical condition, MS; it is even harder to live with two. Physically, I am fine for now. Emotionally, I have built up some resilience, but it is always at the back of my mind: will it continue to grow, or will it stop after all the surgeries and radiation I have had?
Luckily, the healthcare system, through the public system and private health insurance, has covered many of my surgeries, rehabilitation, and some portion of my radiotherapy sessions. Still, it has been very difficult for my family to see me go through surgery, recovery, radiation, and rehabilitation over the years.
I have had a total of three debulking surgeries: two in 2015, one trans-nasal and one trans-oral, and a third in 2021, again trans-nasal. Each came with its own post-operative complications and recovery, and none were able to remove all of the chordoma.
I have also had two separate rounds of stereotactic radiotherapy, the first in 2016 and the second in 2023. Since 2023, routine MRIs with my radiation oncologist have shown that my clival chordoma is stable and unchanged, and I hope it stays that way for as long as possible.
Research is important to me because without research and data, how else can we find a cure or an effective medication to stop or stabilise chordoma?
I want decision-makers to understand that if it were you or one of your family members with chordoma, what would you do to help? It is not only the physical, emotional, and mental toll, but also the financial strain chordoma brings to the patient and their family.