Has anyone been diagnosed with Sacral CHORDoma?

@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! 😝

Read your post with interest. I have Medicare and a supplemental thru Regence Blue Cross. Both have been wonderful! I had to pay $6500 out of pocket for about a half-million dollars worth of bills in 2025. The Chordoma Foundation is an incredible resource. They have a list of doctors with chordoma experience and can also guide you thru the insurance maze. I have copied and pasted a post I just made for someone wanted more info on my journey. Here it is;

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! 😝

@colleenyoung yes, last oct, had 2 stage en bloc removal half of S1 and lower…no radiation. Dr Rhines at MD Anderson and team were marvelous! Clean margins, not much residual pain, no infection, working through rehab this winter. 🙏😁

@bluestuart, how did your appointment with the neurosurgeon go? What's the treatment plan? Seeing 3 new tumors must've been a real gut punch. How are you doing?