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FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?
Sarcoma | Last Active: Feb 11 12:25am | Replies (18)Comment receiving replies
Sorry to hear of your diagnosis. I know of other women whom have been diagnosed in this area.
Are these 7 lumps close to each other, so close that they may be connected? DFSP typically has, what we diagnosed folk describe as, tentacles infiltrating the soft tissue around the main lump/s.
I am a lower back case, having had recurrences in the same location. The second had multiple lumps on it whereas the first and third were more smoothly rounded. But then the surgery to obtain clear margins was larger than expected due to needing to clear the margins of these tentacles.
Some have used Radiation and or Glivec/Gleevec to reduce the size of tumour pre surgery, others have had either treatment after surgery where clear margins were not obtained and available tissue at the site was perceived as inadequate to flap or graft over, readily.
Where are you seeking treatment?
Replies to "Sorry to hear of your diagnosis. I know of other women whom have been diagnosed in..."
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My first tumor became the size of a chicken's egg, It did have tentacles and many more small tumors and then it seemed some of the small tumors coalesced into larger ones. There was a lot of movement of the smaller ones. All physicians thought these were sebaceous cysts and no problem for me-Ha ! & years later I find out what they really were. I am so tired.
Right now I have an appointment (March 6) with a Dr. Alexander Burnett at the University of Arkansas for Medical Sciences /cancer center in Little Rock. But yesterday I met with my hematologist/oncologist (I have Factor V Leiden). She agreed major removal of all tissue in the area was not a good option for me. Major radiation is not a good option either, But chemo may be what I end up doing. My husband (77 yrs old) is getting radiation treatment for cancer in a few weeks, I will wait until he recovers from that before I start my chemo, if chemo is what I do.
Thank you so much for you input. I do so appreciate it.
Susan