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FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?
Sarcoma | Last Active: Feb 11 12:25am | Replies (18)Comment receiving replies
I have just had 7 dermatofibrosarcomas surgically removed from my vulvar area. The gynecological surgeon did not think he was removing anything malignancy. Turns out all of them were and none of the margins were clean. I am waiting to hear about an appointment with an oncologist,
Replies to "I have just had 7 dermatofibrosarcomas surgically removed from my vulvar area. The gynecological surgeon did..."
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?
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@susangourdlady, I moved your post to this existing discussion in the Sarcoma group:
- FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?
https://connect.mayoclinic.org/discussion/fs-dfsp/
I did this so you can connect with others like @karlman @biceto @lala1989 and others. I'm sorry to hear that none of the margins were clean. Have you had an appointment with the oncologist to learn about next steps?