Connect
Has anyone been diagnosed with Sacral CHORDoma?
I was diagnosed eleven months ago with sacral CHORDoma, a rare sarcoma which is slow~growing, radio~resistant and with very few experts in the United States. I am experiencing a whole host of overwhelming difficulties from insurance coverage with medicaid (no experts yet in Michigan), pain and symptom management, nearly any treatment plan, let alone navigating the entirety of the medical system and having the knowledge of knowing that folks who know about this disease are as rare as the tumor itself. I am also seeking out peer support with anyone and ev'ry one who is known to have Sacral Chordoma and individuals who have a friend and/or beloved one afflicted with this aggressive, invasive and malignant nuisance.
Somehow, we must keep smiling with our spirit while we keep a song in our heart.
Breathe in Life,
Breathe out Love.
Like
Helpful
HugInterested in more discussions like this? Go to the Sarcoma Support Group.
Connect
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.
-
Like -
Helpful -
Hug
4 Reactions@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?
-
Like -
Helpful -
Hug
1 ReactionTry 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.
-
Like -
Helpful -
Hug
1 Reaction65 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?