I started having pain in my neck during the covid isolation in March 2020. At the time, I thought my pain was due to my bad posture while working. In May 2020, I went to my medical doctor and she ordered an MRI. The MRI was done on May 5th May 2020 I will never forget this date because the radiologist made a huge medical error.
The radiologist missed the huge tumor on the craniocervical junction and wrote in her conclusion that, aside from some arthrosis on C3-C4, all was perfect. My medical doctor then prescribed kinesiotherapy for me. I did this for two months, but the pain got more and more intense and I started to have some severe sleeping problems. I decided to consult my medical doctor again in August 2020 to help me better understand why arthrosis was so painful. She didn't understand why I was not able to manage the pain, so she organized a consultation with a neurologist.
Unfortunately, the neurologist didn't look at the MRI imaging but only read the conclusion from the radiologist. He did some tests and concluded that I had some nerve problems on the right arm and that my trigeminal and Arnold nerves were both inflamed. He concluded that my arthrosis and my scoliosis caused all my problems. He referred me to a doctor specializing in back problems and started pain medication (opium and gabapentin). In October 2020, I went back to that doctor, but he also only read the radiologist's conclusion of the MRI done in May. In November 2020, he started "cervical elongation" on me. He positioned my head on a machine, and then he left the room. It was torture, and a few minutes into the procedure I started crying. The pain was too much and I removed my head from the machine. The doctor insisted I continue and told me the pain was all in my head. I continued this extremely painful procedure for another fifteen cycles. My already weak health became worse, I lost weight and stopped sleeping, but I had to continue my work. I am separated and need to take care of my two boys, Valentin 15 years old, and Sasha, 13 years old. On the 22nd of February 2021, I was not able to get up from bed, my body was too tired, and I called my doctor to help me. He said that maybe I was depressed about my divorce :) (10 years ago, strange depression) but he agreed to inject me with corticosteroids in my neck to alleviate the pain.
Fortunately, the doctor referred me to his colleague for the injection. This doctor told me that first, he would need to look at my MRI, and because my MRI was done almost a year ago, a new scan was ordered. I went back to the same hospital where I had my first MRI done, and fortunately, I got a different radiologist. I remember waiting for the results, all the people around me got their results back, but not me. I was so tired of being on sedatives and other medications, that I waited without thinking.
At 12.30 pm a nurse came and asked me to go with her for an emergency appointment. I said no there must be some confusion, I don't have an appointment, I am waiting for the results of my scan. She looked sorry for me and said no, no mistake you have to come with me. There were two doctors waiting for me in the room; they asked me to sit down and asked me if I knew why I was here. I told them I was disappointed and that I am not able to manage the pain from my arthrosis. They were very upset that my previous doctor had said that and explained that my situation was very alarming.
I needed an MRI as soon as possible, and because it was Saturday I had to wait till Monday morning. When I arrived at the hospital, the doctor asked for all my imaging. I gave her the scan and the MRI from 10 months ago. I saw her face when she visualized the images from the MRI, she said nothing, but I understood there was a problem.
I did the MRI with gadolinium injection and they repeated the scanner with injection too. When I finished the tests a neurosurgical student came in and explained that the results would first be discussed during the staff meeting and the doctor would call me after. The waiting was horrible, I understood that this could be very bad, but I tried to stay focused and didn't alarm my family and children.
At 10.00 pm, I got the call, a neurosurgeon said I would have an appointment next week and all would be explained then. I cried and told him I could not wait anymore and asked if I had cancer. I remember his answer "not really cancer". What?! I didn't understand this answer. I am a biology engineer and worked my whole professional life in cancer research. I asked again if I had cancer, and his answer again was, not really… I needed to wait one more week, in pain, fear, and under immense stress and caring for my children, trying to protect them. Also celebrating my birthday, turning 44 years old.
On the 8th of March 2021, I finally had my appointment, my mom was with me. The doctor told me that I have chordoma, a rare bone cancer. He said chordoma is benign, but unfortunately because I didn't take care of my health, I had lost a lot of time. He explained that life expectancy was low. He would need to perform three surgeries and he would only be able to remove 60% of the tumor, after that I would need radiation therapy. He told me the prognosis was 50% at five years. I was shocked and had so many questions. I remember trying to explain this to my children, and we all cried. We all slept in my bed that night and as soon as they fell asleep, I started googling. I now understand the doctor saying it is not really cancer, because chordoma is a slow growing tumor. I saw a blog about a girl with chordoma and wrote her a message. The next day, the children stayed home and I got the paperwork ready in case I passed away.
That evening, I received the first email from AVAC, the French patient's chordoma association and I got a message from the girl with chordoma and she asked me to call her. She was at work in a meeting when I called her and when she understood who I was, she got out of the meeting to help me. She will forever be my angel. She spoke with me for more than two hours, she shared her experience with chordoma, and talked about the doctor who saved her life ten years ago. She listened to me and at the end of the call she asked me if she could talk about my medical case with Professor Froelich, I said yes.
My life totally changed after this phone call. Professor Froelich contacted me, THE chordoma expert in France. He understood my distress and offered to help me by reviewing all my images and coming up with a suitable treatment plan. He proposed to enter from my back to fully remove my vertebrae C1 (full of tumor) and to remove the maximum of the surrounding tumor. He was so calm, and confident and I trusted him.
My life changed after this call and for the first time in a very positive way. I was operated on the 23rd of March, 2021 for sixteen hours. It was a very difficult experience because I was so tired and when I woke up I had to wear a Minerva jacket to stabilize my head and I also needed a cementoplasty. I stayed in the hospital in Paris for two weeks without seeing anybody, it was during Covid and my family lives in Nice. Professor Froelich managed to remove all the tumor. I went back home to heal and after four months, I went back to Paris to start radiation therapy. I had to find a place to stay and again was away from my family. Unfortunately, just prior to starting the radiation therapy I got a wound infection. I managed to finish all 41 radiation cycles by mid September. But in October, I had to return to Lariboisiere hospital due to a wound infection. A second operation was needed to remove all the metal and put in some new ones. I stayed in the hospital for three weeks, away from my family. From November 2021 until August 2022 I had to work to accept my pain and my handicap, which is an ongoing process.
Now it feels like I have started a new life; I went back to my job not full time though. I am so grateful to AVAC and Professor Froelich for giving me the chance to spend more time with my family, and friends and to see my children grow up. After a chordoma, life is completely different and we must accept so many things, the fear of it coming back, the ongoing pain, the handicap, and so many other things but there is life after chordoma. Even if it is different we are alive and every day I try to remember how lucky I am to be here.
Tell us your Uncommon Story
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.