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FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?

Posted by citizendeveloper @citizendeveloper, Jan 6 7:40am

I was diagnosed with FS-DFSP. I've already had my MOHS surgery, and today I meet with my Oncologist to get the results of my CT scan. Is there anyone else who is currently fighting this rare cancer? Also, did you buy a lottery ticket? 😀

Laugh or cry, why not do both!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 13 7:58pm

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?

REPLY
Biceto | @biceto | Jan 14 3:15am

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.

REPLY
1 reply
karlman | @karlman | Jan 18 5:39am
In reply to @biceto "Had 3 surgeries over 5 years and only got the final fs-dfsp diagnosis after the third...." + (show)
@biceto

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.

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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.

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