Chordoma Foundation

Blessed to have found a chordoma expert: Emily’s Uncommon Story

In October 2021, I went to an ENT doctor because I was feeling dizzy often. He decided to do a temporal bone CT scan, and incidentally found a “lesion” on my clivus. He really had no idea what it was. He thought at first maybe it was multiple myeloma, so he sent me to a neurologist. I ended up getting an MRI, which was inconclusive to whether it was benign or malignant. My ENT wanted to do a biopsy, but I wanted to do some research first. In my research, I found the Chordoma Foundation, and through them, I found Dr. Raza at MD Anderson Cancer Center. In November 2021, I traveled from Tennessee to Texas to meet with Dr. Raza. He did new scans, and told me he was 95% sure it was chordoma. 

Since it was so close to the holidays, we decided to wait til after the new year for my surgery. In January, I traveled back to MD Anderson for the surgery, which took an endonasal approach. I was in the hospital for eight days because they had to go into the dura, so I had a lumbar drain. The pathology came back, and it was chordoma. I just started proton beam therapy. Overall, I’m doing great at the moment. I have to be careful with my nose, making sure I’m constantly rinsing it out with saline solution.

I’m so thankful they incidentally found my tumor. In the time since, the chordoma Facebook group and the Chordoma Foundation have been super helpful. I’ve met several people on Facebook who have helped me so much, and I have also enjoyed getting info from other chordoma patients on the Chordoma Foundation’s forum. The people I’ve met have answered my questions when I have been nervous and reassured me when I was scared.

My family, especially my husband, have been a great support. And Dr. Raza at MD Anderson has been the biggest blessing. He is so nice and comforting. He explains things so well and is always reassuring but honest. He calls often to touch base to make sure I am recovering well. I’m so blessed I found him.

The Chordoma Foundation has given me so much information. I knew nothing about chordoma before visiting the Foundation’s website. They helped me find my surgeon. They answered so many of my questions just by reading through their site.

If I were to offer advice to someone newly diagnosed with chordoma, it would be to do your research. Do not go to a surgeon who is not in the Chordoma Foundation’s Doctor Directory. I have heard too many stories of patients who have had surgery with a non-vetted surgeon and have had complications or had to have more surgery to fix the prior surgery, or remove more of the tumor the other surgeon couldn’t get. 

Additionally, reach out and ask questions to others. Everyone is always willing to listen and help.

Finally, don’t give up hope — you’ve got this!

We invite you to share your Uncommon Story in your own words, which can help others in our community feel more connected and prepared to take on whatever may lie ahead. And if you need help navigating any part of the chordoma diagnosis, treatment, or survivorship journey, contact our free Patient Navigation Service.



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