I have very recently been diagnosed with DFSP with sarcomateous transformation.
I received the diagnosis over the phone and haven't seen anyone yet. Ive had a CT tap and mri scan and am awaiting the results via MDT discussion at Wales Sarcoma service. This will outline plan for surgery and / or treatment.
Its the not knowing that is getting to me. So many unanswered questions and feeling of lack of control. Ive only told my husband so far, as can’t face pity and loads of questions I can’t answer.
It saus DFSP is rare, with the FS variant being even rarer and more aggressive. Any knowledge of this cancer and my likely path would be greatly appreciated. I'm scared.
Hi Emgem
Welcome to our community, I hope you find it both informative and supportive.
I am Steve, one of the community champions and my experience of cancer is via my wife who has Leiomyosarcoma.
While I cannot share any experience of DMSP-FS I can relate to rare since pretty much all sarcomas fall in to the rare category. My wife's diagnsois was very protracted and was only delivered after it had spread to her lungs. She had two different types of chemotherapy and the second of those managed to render her cancer stable - and it has been that way for over 10 years now.
Just about eveyone on here will emphasise with waiting for results, often people say that is about the most difficult time of the entire process.
<<hugs>>
Steve
