I have been a sacral chordoma patient since 2019. I live in New Jersey and am 89 years old. In 2019, because of intense pain in my tailbone area, I had an MRI that discovered a large sacral tumor. The initial examining hospital in NJ was not experienced with chordoma and wanted to treat me conventionally, but very fortunately my primary care provider was familiar with Memorial Sloan Kettering Cancer Center (MSKCC) in NYC and, out of caution, recommended that facility to me. They also asked me to read literature from the Chordoma Foundation.
At MSKCC after consultation with orthopedic and radiation oncologists experienced with chordoma, plus emails with Chordoma Foundation Patient Navigators — and because of my age and the very difficult location of my large tumor — I decided to have my biopsy at MSKCC and treatment only by radiation.
The biopsy confirmed sacral chordoma, and I began eight weeks of proton beam therapy at once by Dr. Yamada of MSKCC. Subsequent full-body MRIs and CT scans every six months to date have revealed no additional tumor growth and even some shrinkage, and that the chordoma was primary and localized. Pain was significantly reduced halfway through proton beam therapy. Now, two years later, my pain remains minor. The most noticeable effects are significant fatigue, balance problems higher than expected despite my age, and some bladder and bowel control issues.
Through my journey I have felt the support of God as expressed through doctors, the Chordoma Foundation, the chordoma community, and my family. I can only thank them and support them financially where I can.