My chordoma was discovered completely by accident. I was in the process of discharging from the military and underwent an MRI because of lumbar spondylosis. During that scan, doctors noticed a lump on my sacrum that required further investigation. After two biopsies, I was diagnosed with sacral chordoma.
One of the biggest challenges was how little information was available. There were so many unknowns, and trying to understand what the diagnosis meant and what the future might look like was incredibly difficult.
Fortunately, I did not need to travel for treatment. I was very lucky to be able to receive my care locally in Canberra.
The diagnosis came as a shock to everyone because I was only 38 years old and otherwise fit and healthy. Emotionally, it was difficult for both me and my family to come to terms with everything. There was a great deal of uncertainty, particularly while waiting for surgery and radiation treatment to be completed and hoping they would be successful.
Research is important because it will help future patients by providing more definitive treatment options and greater peace of mind. The more we understand about chordoma, the more confidence patients and families can have when making decisions about their care.