My first symptom was numbness in my groin area. A CT scan showed a mysterious lesion in my S2 sacral vertebra. I spent weeks in hospital having X-rays and scans, but there was no clear diagnosis. Eventually I had a biopsy, and it took a full month to confirm that I had chordoma.
At the beginning, I felt almost completely in the dark. Chordoma was unfamiliar, and I had to search for someone with experience. I was fortunate to find a surgeon who had treated chordoma before. Together, we discussed the pros and cons of surgery versus radiation. In the end, we chose surgery: a resection of my sacrum from S2 down. Within six weeks, a team was assembled and I underwent a nine-hour operation. The surgery involved opening my abdomen, moving my intestines, and removing the lower part of my sacrum, including the cancer. My surgeon made significant efforts to save one of my S2 nerves. At this stage, we have chosen not to proceed with follow-up radiation.
Recovery has been the biggest challenge of my life. I lost sexual function and now use disposable catheters to urinate. Bowel management has been extremely difficult. Eventually, through the Queensland Spinal Injuries Unit, we spent three months developing a way for me to manage bowel function. There was no textbook process because removal of the sacrum is rare. I had to experiment with laxatives, diet, bathing systems, and anal irrigation. At the same time, I completed 50 hyperbaric chamber sessions, which helped my healing enormously. A year after surgery, I now have systems that allow me to urinate and manage bowel function within a relatively normal lifestyle. I am also working with pudendal nerve experts to explore whether natural sexual, urinary, and bowel function can be regained.
The emotional impact has been profound. At first, the unknowns of chordoma were frightening because no one seemed to know much about it. My wife Heather and I had to research as best we could, and we often felt alone. The lack of knowledge and support during recovery was traumatic and disappointing. Because there is so little funding and research, patients often face blunt, life-changing options such as radical surgery. Even after surgery, recurrence remains an ever-present fear. Will it return in my lungs? Will it return in my sacrum? Chordoma is a cruel disease that can affect bowel, sexual, and urinary function and then leave patients haunted by the risk of recurrence.
But I would hate to leave my story on that note. Despite the challenges, I lead an active, pain free, happy life and take no medication, and after 18 months I have had no recurrence. I feel very fortunate that I found the chordoma relatively early and found a great surgeon who acted quickly. It is a cruel disease, but I have managed to carve out a good life. I look forward to networking with you all to try and find solutions to better manage this disease and its aftereffects.