When I was 27 years old and pregnant with my first child, I experienced severe lower back pain. The doctors I consulted at the time attributed the pain to my pregnancy and decided not to do any tests. However, deep down, I felt that these pains were not normal. A few weeks after the birth of my daughter, they intensified. So I went for an X-ray, then a CT scan and finally an MRI, which revealed a 6 cm mass centered on my S4 and S5 vertebrae.
The spine surgeon at my local hospital put me in touch with a team of experts at the hospital in Kremlin-Bicêtre. A biopsy confirmed the diagnosis. What a shock! My first internet searches made me panic. My daughter was barely three months old and I could already see myself dying. Fortunately, thanks to the reassuring words of my surgeon, as well as the feedback from patients read on the Chordoma Foundation website, I regained hope and decided to fight.
I underwent surgery in the summer of 2016, for a tumor that was then nearly 10 centimeters. Thanks to the team's expertise, the tumor was removed entirely and without leaving me with disabling after-effects. I was able to get on with my life... until 2019, when I was diagnosed with a recurrence on a routine MRI. This time, the tumor was misplaced: around the S1 vertebra, in the area of the nerves that control the feet.
The first surgeon I consulted suggested that I resect only part of the tumor to reduce the pain, and treat the rest with proton therapy. Before taking the plunge, I decided to consult other specialists. Since there were few experts in France, I turned to Italy. The team at the Istituto Nazionale dei Tumori in Milan gave me a different opinion: according to them, I needed a complete resection of the tumor - and therefore of the sacrum - to give me the best chance.
I listened to everyone's arguments and finally followed the advice of the Italian doctors. In the fall of 2020, I underwent a total sacrectomy. The operation was violent and the recovery long. But I do not regret my choice: even if I now need a crutch to walk, I have no more pain. And above all, I am alive and well with my family.
It's been almost 10 years since I first felt pain in my sacrum, without suspecting the adventure that awaited me. 10 years that I continue to work, take care of my family, and enjoy life. My advice is to fight! Make sure you are under the care of expert doctors, and don't waste time. Learn about the disease, about the latest treatments. Ask for second opinions. Finally, take care of yourself and fight to keep your spirits up: it's worth it!