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.

pb82 | @barman | Feb 6, 2023

In reply to @bicycle3 "doxo did not help" + (show)

I see.

gtreece | @gtreece | Feb 6, 2023

My name is Gloria. I am diagnosed with Uterine leiomyosarcoma. In 2020 I had a stage 1B tumor removed from uterus. I also had a complete hysterectomy. The tumor was estrogen sensitive so I was placed on Letrozole. The side effects have been challenging. Two and a half years in a mass was found through a CT scan. Pet scan reveled no spread. Tumor was removed laproscopically. Tumor was located on right side attached to lower branch of aorta. Genetic study to be conducted. So far I am told only treatment is to remove tumors as they appear. Not sure what questions to ask the medical professionals or how to advocate for myself effectively. I read conflicting information with what my oncologist is telling me, "that radiation and chemo are not effective for this type of cancer" but see trials with chemicals and radiation therapy. Would like to know and understand more about treatments why they work or why not. Also want to know if continued use of Letrozole will be effective in some way. Appreciate any information/advice you may have about this issue.

musajjaivan | @musajjaivan | Feb 5, 2023

Hello, My name am Musajja ivan from Uganda it's been long time feeling this pain in my bones and at those points in the photos and I think it's Osteosarcoma cancer, my question is, it treatable and can I manage to get an appointment for treatment and at how much thanks

Terriebikes | @bicycle3 | Feb 4, 2023

In reply to @barman "Alright.. but.. just a doubt- don't they prescribe doxorubicin and ifosfamide for such stuff?" + (show)

doxo did not help

pb82 | @barman | Feb 4, 2023

In reply to @bicycle3 "I am driving to Manhattan on Sunday for a consultation at Sloan Kettering Monday morning. I..." + (show)

Alright.. but.. just a doubt- don't they prescribe doxorubicin and ifosfamide for such stuff?

gemmalt | @gemmalt | Feb 3, 2023

In reply to @bicycle3 "My doc recommended ebulinin chemo" + (show)

Many thanks I’ll look into it

Terriebikes | @bicycle3 | Feb 2, 2023

In reply to @gemmalt "Hi My Father has recently been diagnosed with undifferentiated pleomorphic sarcoma. He has a skin tag..." + (show)

My doc recommended ebulinin chemo

gemmalt | @gemmalt | Feb 1, 2023

Hi
My Father has recently been diagnosed with undifferentiated pleomorphic sarcoma. He has a skin tag removed from his back Aug 2021 which was diagnosed (incorrectly) as atypical fibroxanthoma (benign) - no follow up needed. 14 months later started coughing up a little blood - biopsy and CT scans later showed multiple metastases in both lungs which were confirmed as sarcoma. Any new treatments available in the USA for this, it is non operable so looks like we only have the Trabectedin chemo option....

Terriebikes | @bicycle3 | Jan 30, 2023

In reply to @barman "So and update in my case.. they recently found out that it was a high grade,..." + (show)

I am driving to Manhattan on Sunday for a consultation at Sloan Kettering Monday morning. I will let you know what they say. The chemo here was not working and the new chemo sounded difficult but if I have to do that I will come back and do that it's called ebulinen.