Has anyone been diagnosed with Sacral CHORDoma?

https://www.cancer.gov/pediatric-adult-rare-tumor/rare-tumors/rare-bone-tumors/chordoma
https://my.clevelandclinic.org/health/diseases/17916-chordoma
I just looked up what you are diagnosed with. Did you check the Mayo clinic for this topic? I feel like if you look into these sites and on mayo you may find connection with one or more who have this cancer.
Looks like you may be pioneer.........

Keep us posted. I hope someone is able to answer you.

@nospilmusics, welcome. I moved your message about chordoma of the spine to the Sarcoma support group (https://connect.mayoclinic.org/group/sarcoma/)

I did this to help you connect with other members who have experience with chordoma, a rare sarcoma, like @mentonette @iavikingfan @tshoss and others.

It is a lot a work being thrown into the unknown world of cancer, insurance coverage, and facing such a drastic fork in the road.

Michael, what treatment have you had? How are you doing today?

Try this: chordomafoundation.org They are INCREDIBLE! I'm just a month into my diagnosis and they have been helpful in steering me to specialists (all of whom are also INCREDIBLE) as well as general information, etc.

65 year old male, active, good health (other than SC), mentally sharp and happy, solid faith. I was just diagnosed last week with sacral chordoma. It was fortunately discovered through a pelvic MRI while checking on some residual nerve numbness from an icy slip/fall last Feb. Lesion is in my S2 and left ala. No pain or symptoms from the SC yet. Starting the process now of education and finding an experienced medical team to help with options. Thankful for this blog, and hoping to connect with others who may have this "unicorn" cancer.
Pax and best regards,
Jack

Welcome @jack78, I'm tagging @nospilmusics and @bobisaacs to make sure they see your introductory post.

Who knew that an unfortunate fall on the ice could lead to your getting a diagnosis of sacral chordoma. Howfully this means it was caught early. You mentioned that you are looking for an experience medical team. If you'd like to seek a second opinion with Mayo Clinic experts, you can submit a request here: http://mayocl.in/1mtmR63

Has a treatment plan been suggested for you? What are your next steps?

Good evening everyone. Last February I woke up one Sunday morning and I saw 2 of everything. I went to the emergency room, driving myself, of course. With an extremely high blood pressure, they thought I was having a stroke. They put in an IV as we were wheeling to CT. After my scan, the doctor told me I had a pituitary adenoma, usually benign, usually not cancerous. Surgery followed a few months later and the surgeons believed they removed it all. Pathology came back as a chordoma. Vision has returned to normal and I have done well for 6 months. Last weekend I had my first follow up MRI and the results are less than optimal. I now have 3 tumors in that same area. I meet with my neurosurgeon next Wednesday to discuss the scan and treatment options. I have come here simply to have a group to talk to. People who understand. My doctors are awesome, so I am not afraid, but sometimes I have questions and it's easier to ask than to research for hours.

A chordoma diagnosis can be a shocking thing. I know, I was diagnosed with chordoma about a year ago. It’s been quite a journey. The MOST VALUABLE resource I have found is the Chordoma Foundation. Look to their website for information, support and even Doctor recommendations. Important since chordoma is a VERY rare cancer (one in a million!). Good luck and please post your journey.

@jack78, just checking in. How are you doing? Have you completed treatment?

@bobisaacs, what was your treatment plan? How are you doing now?

@colleenyoung I sure do appreciate your response, compassionate concern as well as I value this community page!

I have Medicaid which is not acceptable at Mayo Clinic; if there was somehow I may qualify for an exception, I will gladly get an expert opinion from them. (I did recently qualify for social security security disability, and I understand that being on it for two years or so makes me eligible for MediCARE...as I am under 50 and relying on state insurance until I may be able to afford other insurance...or when the medicare kicks in).

As wild as it sounds, though I have consulted with many experts, both in the U.S. and internationally, I've yet to receive any treatment since options are mighty slim. My diagnosis came now 25 months ago.

There is a clinical trial I am praying to get into in Santa Monica at Providence St. John's utilizing pemetexred and pembrolizab: both work for other cancers, yet this combo is now in a phase 2 trial, and they're looking promising to shrink the tumor substantially. I will provide an update when I finally get accepted into the trial...I am held up only by red tape from the insurance company not yet willing nor able to provide a requested letter of agreement...though otherwise I am approved to join the study...and get treatment(s)!

...yes, The Chordoma Foundation is invaluable with its indispensable information and extremely helpful staff.

Let's all stay on the sunny side, staying strong and keep keepin' on!!