I was diagnosed in January of 2019 when I was 21 years old in my last semester of college. I had a “cyst” removed from my tailbone in December that had been causing me issues for years. The doctor wanted it tested just in case, and then I got a phone call from MD Anderson Cancer Center.
I had never heard of chordoma. Neither had anyone I knew.
My team at MD Anderson Houston led by Dr. Rhines of the Brain & Spine Center is AMAZING. I had my tumor, lots of surrounding tissue, and my tailbone fully resected in June of 2019 — so I got to finish school!
It was a tough surgery and a long recovery process, but I trust my team fully.
Now, I am two years post-op and my scans are still clear. I am so grateful. I am active and healthy and my side effects are relatively minimal.
When I reflect on the support I received during my diagnosis and treatment, I am lucky to have extremely supportive friends and family. I was constantly visited by loved ones in the hospital and showered with support. My parents, especially, were right there helping me every step of the way, and I was very dependent on them to help me walk and do everything for months. I also truly believe my nurses and PT/OT team were angels. Their kindness and care were just amazing.
If I were to offer advice to a newly diagnosed patient, it would be that it’s so important to have a team familiar with chordoma since it’s so rare. It’s also important to remember that the numbers you read online can be scary, but every individual case is unique — don’t lose hope.
I made an effort to seek mental healthcare after my surgery, which I had not really done before. It’s important to take care of yourself emotionally and to acknowledge that it’s okay to feel overwhelmed and upset about being diagnosed/enduring treatment. It’s a tough thing. I recently connected with some other young women in the chordoma community and it feels great to feel like I can relate to them.