Chordoma Foundation

Dani’s Uncommon Story: It’s okay to feel overwhelmed

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.

David, uncommon chordoma story

    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.

    We invite you to share your own Uncommon Story, which can help others in our community feel more connected and prepared to take on whatever may lie ahead. If you need help navigating chordoma, check out our free Patient Navigation Service.



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