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spindel cell sarcoma NOS
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Aug 13, 2010 - 9:22 am
I am a 52 year old gal who just joined this group a moment ago...a spindle cell sarcoma (NOS, not otherwise specified)and have been on this trek almost 3 years. The progression of my disease was one tumor removed from the posterior neck...head and neck radiation (IMRT)...one rt.lung surgery for 2 lung mets...then two more tumors removed from the same neck/shoulder area that was treated with radiation...and now have more lung mets on the left and a new mass on an adrenal gland. In reading some of the posts here...I'd just like to say there is also a great sarcoma discussion board with the Sarcoma Alliance...and some very knowledgeable people there. http://www.sarcomaalliance.org/main.shtml (There's a gal on this discussion board, Olga, who seems to be quite knowledgeable!) Yes, this is a tuff cancer...aggressive...and truly the stats are not so good for several reasons. Not enuff of us for good research stats...and the ability of this disease to be so pestersome. One should absolutely be seen by a specialty sarcoma group to begin with. First line of defense is a terrific surgeon who can remove the primary mass with clean margins (no tumor cells). They've shown in research this really is the key...getting those clean margins in the very beginning. There can be so many mishaps along the way...that you need to become 'the captain of your ship' and really inform yourself. The chemo offered to this disease can reduce tumors...but the literature really doesn't show it's effectiveness: tumors coming back in about 8+ months from chemo. |
Joined: Oct 2010
Mine wasn't on the neck...Lower, in the middle of my back near (but not involving, thankfully) the spine. I can echo much of what you write except about recurrence so far. About 13 months ago, I saw my general practitioner about a lump in the middle of my back that had grown from pea-sized to marble-sized in the space of several months. Unfortunately for me, I also had a sebaceous cyst on my upper back which had not grown bigger in about a year. The GP, despite my protesting (not strongly enough) that the former lump felt entirely different from the latter, diagnosed both as sebaceous cysts and sent me off to the surgeon to have both removed. The surgeon removed the sebaceous cyst but, upon examining the other lump, realized it was not also one, so he closed me up, had an MRI done to determine that it was not attached to anything vital, then performed a second surgery to remove it. He said he was "99 percent" certain that it wasn't malignant and sent it off for pathology tests. Guess what?
Since then, I have had r