I had pneumonia in September 2024, and a follow-up X-ray revealed something concerning. At school in October, I was told I likely had a blocked salivary gland. But after multiple referrals, scans, and eventually a surgical biopsy in December, I was diagnosed with NUT carcinoma — a very rare and aggressive form of cancer — just before the holidays.
Because of how rare this cancer is, there’s no standard treatment. In January 2025, I had a 12-hour surgery that included tumor removal, nerve reconstruction, and rebuilding part of my cheek using tissue from my arm. I spent seven days in the hospital recovering and had to use a feeding tube to protect the reconstruction.
After surgery, I underwent 33 sessions of proton radiation and six rounds of chemotherapy. I had a short break, but then started having back pain — scans revealed lesions in my spinal cord. I’m now preparing for additional treatment, including radiation, chemotherapy, and immunotherapy. A clinical trial is also being considered as part of my plan going forward.
Erin’s LifeList:
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Swim with manatees