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.

fionap | @fionap | Nov 1 7:11am

Chondro Sarcoma in pelvis

cindibarre | @cindibarre | Nov 2 9:06am

Welldifferentiated rhetrooeritoneal liposarcoma. Removed 2020 recurrence 2024

sandraspurses | @sandraspurses | Nov 2 10:35am

Leiomyosarcoma, removal in 1990..

Teresa, Volunteer Mentor | @hopeful33250 | Nov 2 3:57pm

In reply to @cindibarre "Welldifferentiated rhetrooeritoneal liposarcoma. Removed 2020 recurrence 2024" + (show)

Hello @cindibarre and welcome to Mayo Connect. I appreciate your sharing your experience here on Connect.

From your post, I see that your first experience with this rare disorder was in 2020 and that you now have had a recurrence this year. What type of treatment is being planned for this recurrence? How are you feeling?

Teresa, Volunteer Mentor | @hopeful33250 | Nov 2 4:06pm

In reply to @fionap "Chondro Sarcoma in pelvis" + (show)

Hello @fionap and welcome to Mayo Connect. I see that you have been diagnosed with Chondro Sarcoma in the pelvis. Is this a new diagnosis for you? Were you having pain that led to this diagnosis?

I found some information on this rather rare disorder on the NIH website. Here is the link to that information,
https://www.cancer.gov/pediatric-adult-rare-tumor/rare-tumors/rare-bone-tumors/chondrosarcoma
Is there currently a treatment plan in place?

cindibarre | @cindibarre | Nov 2 4:10pm

In reply to @hopeful33250 "Hello @cindibarre and welcome to Mayo Connect. I appreciate your sharing your experience here on Connect...." + (show)

No treatment planned as it is now not resectable. No know chemo or radiation per another center of excellence. I've converted to mostly plant based diet. Another ct scan planned this month.