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.