Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

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?

Interested in more discussions like this? Go to the Sarcoma Support Group.

jeshaw6801 | @jeshaw6801 | Feb 19 7:39am

Your mom must have had an oncologist with the incident in 2023. This is the person to consult with. If not an active relationship, you need to find a sarcoma specialist ASAP at the sarcoma center. I don't think your mom has told you everything. She should have been getting MRI or CT scans every three months to get the best chance at survival. I don't intend to be harsh but sarcoma is never a one and done.

jeshaw6801 | @jeshaw6801 | Feb 19 7:45am

In reply to @colleenyoung "@ziahlita, welcome. You may wish to connect with members living with GIST in these related discussions:..." + (show)

@colleenyoung There is a wonderful support group for GIST patients. It's called LifeRaft. I recommend that those with Gist get with them. I have lms but before I got my biopsy results I thought it was GIST. Those folks literally held me together while i waited 21 days for my results. The folks I met there still check up on me.