FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?

I was also just diagnosed with FS-DFSP. I’m awaiting my oncologist appointment. I located a knot on my clavicle and after several months of trying to find a physician who agreed with my concern, a very compassionate surgeon agreed to biopsy & ultimately remove for pathology although he also had no real concern prior to & after excision. His compassion & confidence gave me a lot of peace. So needless to say, the surgeon & I were both shocked with the pathology diagnosis. I can’t seem to locate much info so the feedback here is reassuring. Thank you for making me smile with your lottery comment as that’s exactly how I feel!

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,

Thank you, Biceto!! Your message has given me great confidence in facing DFSP-FS. I am from China, and I just had Mohs surgery on the 9th of this month and am currently recovering.

Had 3 surgeries over 5 years and only got the final fs-dfsp diagnosis after the third. I was referred to the major cancer service in Melbourne, had a wide excision removal. Got clear margins with a smallish deep margin. Follow up every 3 months incl regular scans. Follow up out to 6 monthly after 2 years then to annual. At 5 years I elected to go to a local professor to continue annual review. I am now approaching 10 yrs with no sign of recurrence. No Glivec or radiation.

Wish you well.

I'm tagging @raeangel319 and @biceto as I believe that they have experience with FS-DFSP (fibrosarcomatous dermatofibrosarcoma).

@citizendeveloper, how was your appointment with the oncologist? What are next steps for you?