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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.

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fluttergord | @fluttergord | 2 hours ago
In reply to @moejoe67 "@fluttergord Hello, sorry to hear about your diagnosis. I too am 67 and was recently diagnosed..." + (show)
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@fluttergord
Hello, sorry to hear about your diagnosis. I too am 67 and was recently diagnosed with epitheiold sarcoma (they think) and similar to your timetable you mentioned. Mine started with an aggressive growing tumor in my upper thigh that metastasized to lymph nodes, and lung.
I did 10 rounds of radiation that did wonders on the tumor in my upper thigh, now I am starting another 10 rounds focused my my pelvic area. There is a major lymph node called the lilac in the groin area they are focusing on to reduce the swelling in my leg.
Also, just completed 6 rounds of chemo, gemcitabine & docetaxel, only to find out the cancer actually grew during this period. If they recommend these 2 chemo, just beware that the efficacy on sarcoma is less than 30%. Hoping my experience is of value. Wishing you the best. Joe

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@moejoe67
How things going. Have they came up with a new plan of treetment or surgery. Wishing you the best. This is so rare and different for every one, the specialist must struggle as there are no rules to follow. I get my CT and MRI in a couple of weeks, and hopeing nothing has changed, so I can have the surgery to remove it. I am most worried about the lung CT. Don't want to find it has spread. One day at a time they say. Chin up and fight on. Hope you are doing well
Gordon

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