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extraskeletal osteosarcoma

Posts: 1
Joined: Oct 2016

Anybody know anybody who's had extraskeletal osteosarcoma?  My wife's been diagnosed with this, had the first surgery in May 2015 to clean out the sarcoma that was removed from her butt (discovered in a visit to dermotology), then had a follow up surgery in June 2016 to remove one that showed up in her lung. We've got another one now, in the other lung, and are now considering chemo. Just don't know whether the continued surgeries will get all of it.  As you know, this is a very rare sarcoma, originally believed it woudn't spread - but it did.

My wife is freaking out, 50 yrs old, hoping some of the plans to deal with this will work.  If anybody has any good news about this type of cancer, we'd really appreciate hearing from you. As you know, there isn't much info on this type, very rare.


Posts: 3
Joined: Nov 2016

Hi Dan,

I am not a surgeon but I am a physician with a recurrent sarcoma (extraskeletal myxoid chondrosarcoma).  My recurrance is not in my lung, though I sort of wish it was as that location can be addressed more aggressively.  From my extensive reading and discussions with oncologists, I would encourage additional surgeries to address lung mets.  While I do not know your wife's exact details, I do know that sarcoma's are often poorly responsive to chemo and that ultimately surgery would be needed for definitive care.


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