My journey began in October 2018 when I developed pain around my shoulder blade. At first, I thought I had simply strained a muscle. After a few weeks, the pain continued to get worse, so my doctor ordered an MRI. The scan showed a tumour very close to my spine, and I was quickly admitted to hospital for a biopsy and further scans.
The biopsy report initially diagnosed me with metastatic prostate cancer, and my surgeon performed a debulking operation based on that information. After surgery, further pathology testing of the tumour meant I was reclassified as having a cancer of unknown origin. I lived with that uncertainty for the next nine months. It was only because I pushed hard for second and third opinions that I was finally diagnosed with chordoma.
Learning that diagnosis changed everything. If my surgeon had known it was chordoma from the beginning, he would have performed a completely different operation.
After my diagnosis, I received stereotactic body radiation therapy (SBRT) at Peter MacCallum Cancer Centre. Unfortunately, the cancer continued to recur approximately every 19 months, leading to further surgeries and debulking procedures in May 2020, March 2022, and March 2025. Since then, the disease has become more aggressive, requiring three additional operations. In April 2025, I started immunotherapy, and I am now being treated with imatinib.
The first year was by far the most challenging because I had no clear diagnosis. Being told I had a cancer of unknown origin made it very difficult to know whether I was receiving the right treatment. Once Peter MacCallum diagnosed chordoma and connected me with the Chordoma Foundation, I finally had the support and care I needed. Unfortunately, because of the delay in diagnosis, I missed the opportunity to have proton beam therapy and a more appropriate initial surgery.
Although all of my treatment has been in Melbourne, I travelled to Massachusetts General Hospital in Boston for a second opinion. They had previously provided a third opinion on the pathology of my tumour. By then, however, it was too late for proton beam therapy.
Chordoma has had a significant impact on both me and my family. I owned my own business, but after my diagnosis I decided to sell it so I could focus on my health. The cancer, ongoing treatments, surgeries, and countless medical appointments took me away from my business and placed a considerable emotional strain on my relationships.
Research is critical to developing better treatment options that give people living with chordoma both a longer life and a better quality of life. This disease places an enormous physical and emotional burden on patients and their families.
I would also like to acknowledge the Chordoma Foundation, especially Shannon, who has been an incredible source of support over the past eight years. I honestly don't know where I would be without her and the Foundation.