@colleenyoung
I was diagnosed with a sacral chordoma in February of 2025. I had 2 MRI’s and a biopsy which showed a very large tumor (about the size of a mini nerf football). I spoke with 4 neuro surgeons and 2 proton oncology radiation doctors recommended by the chroma Foundation. All agreed that due to the size and location of my tumor a total resection probably wasn’t recommended. I was all set to travel to Houston (I live in southern oregon) when I spoke with one final radio-oncologist. He showed me my MRI and explained that the reason I had not experienced symptoms before now (I’m 72) is that my tumor was growing out the FRONT of my spine. That’s the reason it got so large— chordoma is a slow growing cancer. He said he had spoken to one of the neurosurgeons I talked to and they thought they could take care of my symptoms by performing a laminectomy. So I had that surgery May 2 in LA (Cedar Sinai) followed by 35 sessions of proton therapy at California Proton in San Diego. I have recovered well and have some pain in my hips and back controlled for the most part with OTC medications. Even at 72 I am able to play golf and racquetball and work around the house. It’s my new body and I have to rest some but I’m out there doing it! I chose my course of treatment due to my age and desire for a good QUALITY of life. I don’t want to “limp into my 80’s” as I’ve told my doctors. Chordoma is a tough diagnosis and I’ve accepted that it probably will return. Whether that’s 6 months, 6 years or 16 years we’ll face that when it comes. A little long-winded, but you asked! 😝