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Dermatofibrosarcoma Protuberans ( DFSP ) on Face

DFSPsucks
Posts: 2
Joined: Apr 2010

I apologize in advance if there is anger in this message, however I am so frustrated.

Around 2003 I had MOH's surgery on my right leg, to remove DFSP. Although the tumor wasn't excessively large, the tentacle like projections of the DFSP extended far beyond the actual lump.

Since my initial surgery, I moved away from my hometown, and I am now seeing new doctors.
I have complained about throbbing pains at the site of surgery, fearing that a regrowth might be occuring, and doctors totally discredit what I say.

Most recently, it has been about 2 months now. I have this mass growing on my face. It is growing and replicating fast. I completely fear it is DFSP spread to my face.

I want to cry. My dermatologist at UCLA has admitted to knowing nothing about DFSP. My oncologist at UCLA also seems to be completely in the dark when it comes to this disease.

I feel like I know more than they do. They have no interest in running tests, they totally discredit all my concerns.

Anyway, I have an appointment to have my face looked at. I'm totally in fear. If this has spread to my face, then there is no way I am going to have the willpower to survive. I can't stand scars. If my face must be cut into, I will commit suicide. I'm not kidding.

Also if anyone out there has DFSP, don't listen to doctors who say it grows slowly. My DFSP was rapidly growing in size. This growth on my face has doubled in size in just one month.

I don't know what else to do. Besides UCLA where the heck do I go. Does anyone know any good doctors in the los angeles area, or even anywhere in California, I will travel.

thanks

JC (not verified)

Hi,

There are other forums on this site with more responses and info. Sometimes it is difficult to find them. I will try to identify some.

JC

natmcg
Posts: 118
Joined: Jun 2012

Im writing this in the hope that you may one day check your 2011 post and will know you have helped another DFSP survivour .
Thanks for the warning. I was diagnosed 5wks ago( May 29th 2012) wth dfsp and have been told I may have to wait 6 more wks before Mohs can be done. This was going to interfere wth overseas travel plans so I was considering leaving it even longer as I was told and have read this is a very slow growing cancer. But I have had my so-called fatty tissue tumor for over 10yrs so I am going to look for another doctor asap. I hope you have had a full recovery. All the best for the future and thanks again for making me realise that this may not be the slow growing cancer that people say it is . Take care
Nat.

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