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.

imjazzco | @imjazzco | Jan 6, 2023

Hello my name is Irene. I am the 1 in a million women who was diagnosed with an angiosarcoma caused more than likely by radiation from an earlier breast cancer radiation treatment. My breast cancer was about 14 years ago, so this was a big surprise. I was diagnosed with the angiosarcoma 2 years ago and had it removed from under my arm near the radiated area. Luckily I found it early enough however the doctors did remove parts of 2 ribs just to be careful. I then went through 6 months of hard chemo, all different types. Now, 2 years later another spot has appeared on the skin. It's very little and hasn't spread. I will go back to the operating room on Monday. My doctor told me it's not unusual that this can appear again on the scar of the last surgery. He has a colleague that was operated on 3 times for returning angiosarcoma and then it never came back, so I am so hopeful!
The crazy thing is I went through genetic testing a few years back and everything came back negative, but my father had a leiomyosarcoma. He had also received radiation and 12 years later was diagnosed with that. For this to be a rare cancer that has shown up twice in my family is leading me to believe maybe it is genetic, I am not sure.
I pray everyday I can beat this and so far God has put me in the right place to have it treated quickly each time.

tynerlisa | @tynerlisa | Jan 5, 2023

hello, my name is lisa. my son was diagnosed with synovial sarcoma in 1998. it was in his foot. he had previously had a sports injury in the foot. a large lump appeared and the rest is history. we took him to a university hospital and they recommended amputation of the foot. what a horrible decision for him. he was just 19 years old. when the amputation was done the dr said all the parameters seemed to be intact and gave him the chemo options. he opted out of the chemo with the option of very close follow ups. he has never had a reoccurance but they did say that if it did happen it would more than likely be in the lungs. it has been a long time and i thank the drs and the good Lord for his life.

Terriebikes | @bicycle3 | Dec 22, 2022

In reply to @bicycle3 "such a remimder!" + (show)

Many tearful thx.

Colleen Young, Connect Director | @colleenyoung | Dec 18, 2022

In reply to @bicycle3 "Doxil chemo today." + (show)

How are you doing Terrie @bicycle3 ? Are you tolerating chemo okay?

Colleen Young, Connect Director | @colleenyoung | Dec 18, 2022

In reply to @erika42 "Hi everyone. I was diagnosed in September with a malignant peripheral nerve sheath tumor on my..." + (show)

Hi @erika42, you may wish to connect with others living with malignant peripheral nerve sheath tumor (MPNST) in this recent and active discussion:
– Malignant Peripheral Nerve Sheath Tumor https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/

Colleen Young, Connect Director | @colleenyoung | Dec 18, 2022

In reply to @eokwuns "What is the best treatment after surgery for ossifying fibromyxoid tumor." + (show)

Welcome @eokwuns, have you had surgery? Is additional treatment like chemo being considered? How are you doing?

Colleen Young, Connect Director | @colleenyoung | Dec 18, 2022

In reply to @zamphiria "Hello, My 30yo cousin has extraskeletal osteosarcoma. It originated in her leg, but then metastasized to..." + (show)

Hi @zamphiria, your cousin is in good hands at Sloan Kettering. If you would like to consider a second opinion at Mayo Clinic, you can find more info here: http://mayocl.in/1mtmR63

How is your cousin doing on immunotherapy?