Chordoma Survival

[BigDaddyOG]

Has anyone out there survived having Chordoma?
The doctors are pretty sure I have one on my sacrum, but no one wants to give me a prognosis.
The web says that the median life expectancy is 7-8 years, and I'm wondering if anyone reading this post has beaten that.

If so, we need to chat.

Thanks

[ill13632]

I have a chordoma too
Connect to Josh Sommers and others at the Chordoma Foundation who has survived 13 years but did have a recurrence.  Figure out what he did and post it on here for us to live

[Sara_MHModerator]

Hello and welcome to the forum. This is a bit of an old post. If you start your own, we can get fresh information and conversation going.  https://www.mayoclinic.org/diseases-conditions/chordoma/cdc-20355401  There are treatments for this type of cancer.  When were you diagnosed and where are you at in treatment progression?  

[deb131163]

My father was diagnosed with sacral chordoma in 2002 at 70. After a very big operation and a long recovery he is now 80, so we have thank god for those 10 years. Four months ago he was diagnosed again with chordoma in the pelvis. This time , doctors have decided not to operate due to medical history and dad is frail . 11 mri scans on  spine in 10 years. Doctors told us this is where it would come back. We thought he had beat it, but regretfully the future is not bright as before. If you are diagnosed , it is not a death sentence. If you have surgery and radiation ,DEMAND a body scan regularly. Wish we would have known. Love and Best Wishes to you ,
Deb

[JimSmitts]

BigDaddyOG, I have not myself had chordoma, but I saw no one had responded yet. I see you're in Florida, so I'm not sure exactly what options you would have in your area, but from what I understand proton therapy is another avenue for treatment that might be worth considering too, as you try to narrow down your options and best course of action. Best of luck to you through this hard time.