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.

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?

Terriebikes | @bicycle3 | Dec 17, 2022

In reply to @ajb1938 "Thanks for your encouraging words@ May you have s Blessed Christmas filled with Peace, Joy &..." + (show)

This round of chemo and radiation on top of an infection seem more challenging.

ajb1938 | @ajb1938 | Dec 16, 2022

In reply to @ellengrubb "Praying you’ll be blessed with positive experiences and interaction with friends and family. I too, have..." + (show)

Thanks for your encouraging words@
May you have s Blessed Christmas filled with Peace, Joy & Love!!

❤🥰🙏❤🥰🙏❤🥰🙏

timdale | @timdale | Dec 15, 2022

In reply to @rggj "Pleomorphic Liposarcoma. My life and perspectives changed when I heard those words. I learned to live..." + (show)

I had liposarcoma 10 years ago. It never returned. Now I get CT scans every 4 years as a followup. Best of luck to you - I wish the same for you.

Terriebikes | @bicycle3 | Dec 15, 2022

In reply to @ajb1938 "God Bless! Offer all your pain, anxiety, fear & discomfort to Jesus for healing grace's to..." + (show)

such a remimder!

Terriebikes | @bicycle3 | Dec 14, 2022

In reply to @sauer01 "Thank you Please post your continued journey. I have liposarcoma. Bless you also." + (show)

Doxil chemo today.

rggj | @rggj | Dec 14, 2022

Pleomorphic Liposarcoma. My life and perspectives changed when I heard those words. I learned to live my life in increments of three months, then six months, an now, a year. The C word just does that to you. Stay positive and live in the moment. It will never, not be on your mind from this point forward. But , you learn to live with it. I wish you all the best outcomes!

sauer01 | @sauer01 | Dec 13, 2022

In reply to @ellengrubb "Praying you’ll be blessed with positive experiences and interaction with friends and family. I too, have..." + (show)

Thank you
Please post your continued journey. I have liposarcoma. Bless you also.

ellengrubb | @ellengrubb | Dec 13, 2022

In reply to @sauer01 "Just found out today that I have a soft tissue sarcoma. Thank you for the positive..." + (show)

Praying you’ll be blessed with positive experiences and interaction with friends and family.
I too, have soft tissue cancer - Synovial sarcoma in my calf. Had it removed and radiated. Am feeling great and at peace.