Diagnosed with sarcoma? Let's share
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.
Jeff Thanks so much for your reply. I have now signed up with Mayo Clinic Connect and someone is going to call me soon so hopefully that can get me to Dr Moore but will keep you in ready reserve if needed! Couple questions for you - now that you are quite a few years down the road from your surgery, how have you done and are you pleased with where you are? Is there anything that you can no longer do and is your speaking, eating and swallowing functions satisfactory to you? Also, how old are you if I might ask as age can impact recovery time. Truly appreciate your input.
Small cell squamous
I am 70 years old and my major reconstruction surgery was October 24, 2016. I have all my functionality. Last year we discovered that the Chondrosarcoma returned on the other side. Dr. Moore removed it and I am still fully functional. Again, my guidance if you want quality of life you have to get a consult with Dr. Moore. If you want to discus send me a private message with your cell and I will call you.
As an aside, if you call the ENT department directly at 507.405.2935 and request an appointment with Dr. Eric Moore. Share your diagnosis because they really like unicorns with unique challenges. Best to you.
Of course. I'm 40.
So and update in my case.. they recently found out that it was a high grade, grade 3 tumor of dedifferentiated liposarcoma. The surrounding mass was found out to be grade 2.
Jeff would love to speak with you directly. Private message me and let me know when would be a convenient time for a call. Many thanks Eric
Welcome @emattson. Please note that I removed your personal phone number from your message. Mayo Clinic Connect is a public forum. It is better to use the secure private message function to exchange personal contact information. As a new member, you will be able to send private messages in a few days. You can receive private messages any time.
What type of sarcoma?
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.