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.

gtreece | @gtreece | Feb 9, 2023

In reply to @bicycle3 "yes" + (show)

Thank you for taking the time to reply to my email. Has not spread to lungs as revealed by recent PET scan.

gtreece | @gtreece | Feb 9, 2023

In reply to @luna6922 "Hello. I have the uterine leiomyosarcoma as well. Full hysterectomy in 2021. In 2022 removed a..." + (show)

Thank you for taking the time to reply to my email. Did you or do you take an estrogen blocker? Do you know anything about doing a MRI rather that CT scan to avoid the radiation? Keep up the good fight.

Terriebikes | @bicycle3 | Feb 9, 2023

In reply to @gemmalt "Was this for metastatic sarcoma that has spread to lungs?" + (show)

yes

Terriebikes | @bicycle3 | Feb 9, 2023

In reply to @gtreece "My name is Gloria. I am diagnosed with Uterine leiomyosarcoma. In 2020 I had a stage..." + (show)

started new chemo yesterday, erubilin

Terriebikes | @bicycle3 | Feb 9, 2023

In reply to @posi9 "Although rare, Sarcomas seem to be becoming more prominent. I had radiation induced Angiosarcoma of the..." + (show)

I have spots on lungs.
New chemo yesterday, erubilin

Terriebikes | @bicycle3 | Feb 9, 2023

Trying ebulinin

gemmalt | @gemmalt | Feb 8, 2023

In reply to @posi9 "Although rare, Sarcomas seem to be becoming more prominent. I had radiation induced Angiosarcoma of the..." + (show)

Oh dear...my Dads resulted from a skin tag misdiagnosed as benign (should have been diagnosed as undifferentiated pleomorphic sarcoma). Sorry to hear it’s metastasised to lungs - let me know how you get on, Dad has the same xx

luna6922 | @luna6922 | Feb 8, 2023

In reply to @gtreece "My name is Gloria. I am diagnosed with Uterine leiomyosarcoma. In 2020 I had a stage..." + (show)

Hello. I have the uterine leiomyosarcoma as well. Full hysterectomy in 2021. In 2022 removed a tutumor from my lung. I have been told the same information. I have follow up ct scans every 3 months and hope each time that I have clear scans. With all my research and w my drs I find the the same information you have. That I need to remove the tumors are they come up. If I learn anything new I'll post to you.

posi9 | @posi9 | Feb 7, 2023

Although rare, Sarcomas seem to be becoming more prominent. I had radiation induced Angiosarcoma of the breast in 2019 (age 60) with a reoccurance in 2021........... Both required surgeries only. Unfortunately, the cancer has metastasized to the lung. .......so now it’s the waiting game for the lung biopsy. THE WAITING IS THE WORST ESPECIALLY WITH SUCH AN AGGRESSIVE CANCER. Prayers to all.