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.

juliska32 | @juliska32 | Jul 10 9:04am

I recently was diagnosed with leiomyosarcoma in retroperitoneal area. Had tumor removed with positive margins and will be starting chemo. I will be starting Doxorubicin and Dacarbazine, i had a second opinion about replacing Dacarbazine with Trabectin. Curious if anyone else is using either therapy.
Thank you

banana11 | @banana11 | Jul 9 10:04am

In reply to @colleenyoung "@banana11, when is surgery? How are you doing with getting things ready for your recovery?" + (show)

@colleenyoung
July 15! This last week has been mentally tough!! Getting real now!! I’m prepared but not prepared!

Colleen Young, Connect Director | @colleenyoung | Jul 8 8:04pm

In reply to @banana11 "My Myxofibrosarcoma is in my hip area! I had 25 radiation treatments and receive Ketruda every..." + (show)

@banana11, when is surgery? How are you doing with getting things ready for your recovery?

banana11 | @banana11 | Jun 25 8:31am

My Myxofibrosarcoma is in my hip area! I had 25 radiation treatments and receive Ketruda every 3 weeks! My tumor shrunk, but damage done to top of femur and small part of pelvis! Hip disarticulation is scheduled! I feel fine, no medications, my walking is normal, and I perform all daily activities! The reality of surgery mid July is starting to hit me! Trying to keep a positive recovery plan, and prepping for PT and prosthetic use! I was an athlete all my life and my mind won’t accept failure! I hope it serves me well!

Colleen Young, Connect Director | @colleenyoung | Jun 23 8:23pm

In reply to @banana11 "Myxofibrosarcoma in lower left extremity…" + (show)

@banana11, welcome. You may be interested in joining other members talking about myxofiborsarcoma in this discussion:
- Myxofibrosarcoma: What treatments did you have?https://connect.mayoclinic.org/discussion/myxofibrosarcoma/

banana11 | @banana11 | Jun 10 9:42am

Myxofibrosarcoma in lower left extremity…

Colleen Young, Connect Director | @colleenyoung | Jun 7 10:14am

In reply to @blender "Hello everyone - Solitary Fibrous Tumor (recurring) here. Originally identified in July 2024, when my primary..." + (show)

@blender, welcome. You might appreciate joining this related discussion.
- Solitary Fibrous Tumor: Anyone have experience with this?https://connect.mayoclinic.org/discussion/solitary-fibrous-tumor/

How are you doing on temozolomide with bevacizumab treatment?

blender | @blender | May 24 12:32pm

Hello everyone - Solitary Fibrous Tumor (recurring) here. Originally identified in July 2024, when my primary care doc informed me I was actually not getting middle-aged dad body (as I had just assumed) and had a CT scan done. The original tumor was massive (27 x 27 x 13 cm), and removed via surgery in October 2024. Fast forward to April 2026, when lesions appeared on my liver. The biopsy indicated a resurgence of the same type of tumor I had before... the twist is they can't find it. They did a PET scan and couldn't ID any abnormal activity.
So now I'm on my fourth day of my first cycle of chemo (Temozolomide along with Bevacizumab infusions).
Thanks for reading, and it's a bit comforting to know there are others out there.

Justin McClanahan, Moderator | @JustinMcClanahan | May 7 8:29am

This week's member spotlight features a member of the Sarcoma support group who many of you have crossed paths with. Learn more about @ctflyr his thirst to learn every day, sharing each moment with his life partner and making life an adventure🙂

Life is an adventure: Meet @ctflyr https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/life-is-an-adventure-meet-ctflyr/

Check out all the Member Spotlights here and follow the About Connect blog for future update: https://connect.mayoclinic.org/page/about-connect/