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FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?

Sarcoma | Last Active: Feb 11 12:25am | Replies (18)
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@lala1989

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!

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Replies to "I was also just diagnosed with FS-DFSP. I’m awaiting my oncologist appointment. I located a knot..."
Biceto | @biceto | Feb 8 3:02am

Stay positive, seek out treatment and be comfortable with the Surgeon/Oncologist and their plans. Ask questions. Feel free to make contact if you need to chat.

Ask about Radiation Therapy, and Glivec/Gleevec and the role they may play in strategies.

Also ask if the Oncologist would consider FISH, or RT-PCR, analysis to establish the individual chromosomal mutations of your tumour. These may give insight into likely Chemotherapy or Immunotherapy options down the track.
These are expensive tests, so many Providers will not fund them for everyone. FS variant is more aggressive so more likely to be considered.
Reach out if you have questions, but include a Country and State/Province as services and options may differ between regions.

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