My name is Zaira and I am 33 years old. At the end of November 2022, while I was at home I fell from a chair, and my husband took me to the emergency room, as I was in a lot of pain after the fall. In the emergency room, some tests were performed, which found a fracture in the sacrum (in S4 and S5). However, along with the fracture, there was a strange image that would need to be investigated. A few days after the fall, I went to an orthopedist specializing in the spine, and he asked me for additional tests, which confirmed a small tumor in the sacral region (1.8x1.7x1.4cm)!
I then went to an orthopedic oncologist, who asked me for a biopsy, which confirmed chordoma. He was very positive about the surgery (the only possible treatment here in Brazil), due to the size and location of my tumor. They did other tests that ruled out metastases and had the surgery (partial sacrectomy) on January 16th 2023. I had a surgical wound complication, and I had to have a drain for a few weeks. I've already returned to work, but I still feel a little pain with some movements. But I'm happy that everything worked out, that I didn't have any sequelae, and that the anatomopathological examination of the surgical specimen showed free margins!
I know I'll have to be followed up for the rest of my life, and I'm a little anxious about the possibility of recurrence, mainly because in Brazil there are no other treatment options. I want to learn about other stories of victory too. A week ago I had my first follow-up exams… (MRI and PET-CT) both were normal!
The importance of having support
Having the support, strength, and love of my husband, my parents, sisters, and friends was essential! Often times I was sad and worried, and they renewed my hope. I also had a lot of professional psychological support, and my faith in God was also what sustained me! Of course, and not least, finding up-to-date information on the Chordoma Foundation website helped a lot too!
Cancer does not define you!
Chordoma is not a death sentence! Seek information! Look for good professionals who can help you on this journey. If necessary, ask for a second, or third, or fourth opinion! Seek help on the Chordoma Foundation website! Don't be afraid or ashamed to ask for help and accept the affection and love of your family and friends! Also, seek psychological help!
I found the Chordoma Foundation while researching cancer on the internet. It was the only place I found with a lot of information and all up to date! Knowing that I was not alone, that despite being a rare cancer, there were so many people gathered there in search of a cure, and to share their experiences. It comforted me! The Chordoma Foundation is a great support network!
