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.

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?

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?

sandraspurses | @sandraspurses | Nov 2 10:35am

Leiomyosarcoma, removal in 1990..

cindibarre | @cindibarre | Nov 2 9:06am

Welldifferentiated rhetrooeritoneal liposarcoma. Removed 2020 recurrence 2024

fionap | @fionap | Nov 1 7:11am

Chondro Sarcoma in pelvis

Colleen Young, Connect Director | @colleenyoung | Sep 7 12:36pm

In reply to @leahinaustin "Endometrial Stromal Sarcoma. Diagnosed in 2018 and radical hostorectomy the same year. Been on AI inhibitor..." + (show)

@leahinaustin, you may wish to connect with other members living with endometrial stromal sarcoma in this related discussion:
- Endometrial stromal sarcoma (ESS): What treatment did you get?
https://connect.mayoclinic.org/discussion/ess-cancer/

leahinaustin | @leahinaustin | Sep 3 5:25pm

In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)

Endometrial Stromal Sarcoma. Diagnosed in 2018 and radical hostorectomy the same year. Been on AI inhibitor since then. Anybody on an AI for 6 years?

bch0127 | @bch0127 | Aug 11 4:16pm

In reply to @sagan7 "Hi Leroy, I’m a 43 year old man who has been living with Kaposi’s Sarcoma for..." + (show)

I have recently been found to have Kaposi Sarcoma (March)
I am not of Mediterranean background (Irish)
Just beginning treatment & would like to continue conversation
Best
Bernie

sagan7 | @sagan7 | Aug 8 11:57pm

In reply to @leroy23 "Who can help me connect with someone specifically who has had HIV for over 10 years..." + (show)

Hi Leroy,

I’m a 43 year old man who has been living with Kaposi’s Sarcoma for the past 10 years. I don’t have HIV and my physicians believe I developed it due to my Mediterranean background. In all this time, I have never found anyone else with it and I would love to connect. Please reach out.

Colleen Young, Connect Director | @colleenyoung | Jul 29 1:42pm

In reply to @ronnie79 "Solitary Fibrous tumor sarcoma on my head. Diagnosed 11/2018" + (show)

Hi @ronnie79, you've been living with solitary fibrous tumor sarcoma for a while now. You're story and experiences would be welcome in this discussion:

- Solitary Fibrous Tumor: Anyone have experience with this?
https://connect.mayoclinic.org/discussion/solitary-fibrous-tumor/