In my case, it all started by chance. Because of severe pain, I was scheduled to have my entire coccyx removed. During the MRI, the doctors noticed an additional mass — but no one seemed concerned, and no biopsy was done beforehand.
During surgery, my coccyx and a tumor were removed. Three days later, I was discharged. But only eight days after the operation, I had to be rushed back to the hospital as an emergency case — the wound had become infected with two types of bacteria.
After four long weeks, I finally received the pathology results: a sacral chordoma. I wasn’t given any further information. The doctors simply told me to contact the local Comprehensive Cancer Center (CCC), where my case would be discussed.
I remember thinking, Chordoma? What is that? I searched online, desperate for answers. I felt completely alone — anxious, confused, and overwhelmed.
When I finally met with the team at the CCC, I was ushered into a room with six doctors. They briefly explained, in medical terms, that I had a sacral chordoma and that they had decided not to take further action. No treatment plan, no referral to a specialist center — just a suggestion to come back for a CT scan in six months.
I was stunned. Everything I had read online told me this approach wasn’t right. I started searching again and came across Irene Badura, who was incredibly kind and helpful. Through her, I found my way to Heidelberg, where the doctors were familiar with chordoma and actively researching it. They were surprised by the initial approach and immediately recommended carbon ion radiation, which I received for nearly four weeks.
My surgery took place in June 2023. For two years after that, I had CT and MRI scans every three months; now it’s every six months. There is still a small space-occupying lesion visible — something that currently worries the radiologists more than me.
Looking back, I’m grateful that a chance encounter and a patient connection led me to a team that understood my rare disease. It made all the difference.