Connect
Diagnosed with sarcoma? Let's share
Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.
As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.
Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?
Like
Helpful
HugInterested in more discussions like this? Go to the Sarcoma Support Group.
Connect
I was diagnosed on January 20, 2026 with GIST on the middle of my esophagus. My surgery is pending my CT Scans and genetics testing of the biopsy sample and my blood.
@ctflyr
Thank you very much. I will definitely look into the one in Santa Fe. That’s not too far from me. Thank you very much.
@debschmalbach
In reply to your "Outside Referrals " post......
Hi Debi......
Christus-St Vincent in Santa Fe has a new cancer center and they are in the Mayo network. They could work directly with your Dr at Mayo. If that's not helpful, try MD Anderson in Houston or Cedars-Sinai in Los Angeles. Also, try sarcomaalliance.org for other recommended sarcoma centers. Best wishes in getting the support you need!
-
Like -
Helpful -
Hug
1 Reaction@manal10
You are a good friend.
My grandson, age 18 was diagnosed with the very same diagnosis this past August. I have been on this site since that time and have found it to be a port in the storm. The recommendations were like a potential lifeline. However, it was the connection with others that carried the day.
Since we are all in different places in this journey, please let me know where your friend is with all of this and what information would be helpful. At this point, my only advice is to take one day at a time and continue seeking support.
@ctflyr
Thank you. I am presently looking at everything and just gathering information. I appreciate your sharing this. Deb
Thank you for the encouraging words. Glad you are managing well.
@debschmalbach my quality of life is pretty good. For most they think I'm healed, until they realize I am still getting infusions. I'm back to choir and quilting. We also arranged for my infusions to gap a week so we could travel to Italy for 16 days. The trip was easy cause there was a plan for each day. We walked 57 miles on our trip. The biggest day was 15,000 steps.
-
Like -
Helpful -
Hug
1 Reaction@debschmalbach
Hi again, Debi.....
Not sure if this would be of interest , but Immunocine in Cancun, Mexico, works with Dendritic Cell Therapy... and not chemo...training your immune system to fight your disease. It's not covered by Medicare or insurance, but it may be something to investigate prior to a chemo decision.
@jeshaw6801
Wow. Thank you. That is very inspiring. I would like to ask if you felt like you still had quality in your life with the chemo but I am hearing you say you still get to hold your grandchildren. I think that clarifies it for me, wishing you many precious moments with your grandchildren.
@ctflyr
Thank you so much for replying. It means a lot. There are such balance in this between hearing the advice that’s being offered to you weighing that out against your own personal desires and then making a choice. Thank you and I wish you well.