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DFSP Dermatofibrosarcoma Protuberans
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Mar 02, 2012 - 8:26 pm
Have you been diagnosed with this rare sarcoma? I have started a Facebook page (DFSP - Dermatofibrosarcoma Protuberans) to help everyone share information. I am a new diagnosed person. The information is scarce. I am waiting to find out what are my next steps but it's been 12 weeks since my Dermatologist has known which seems way to long for me. I have had the mark on my back for 25 years. I'm hearing it should be taken out sooner than later but the doc doesn't seem concerned .... |
Joined: Sep 2011
Hello Fedeyks
I was diagnosed with dfsp in Sept 2011. My dermatologist recoginized it immediately. It was on my forehead near hair line. he took out the golf ball size tumor and sent me to Cleveland Clinic. On 11/8 after a 9 hour surgery that included sanding my skull, I can honestly say I am doing fantastic. A free form patch from my shoulder replaced part of my forehead but the scar is hardly noticeable. I would strongly suggest you have this sarcoma taken out asap. Mine had another underlying sarcoma - something you would rather not have.. Cleveland Clinic is a wonderful place!
Good Luck
Joined: Feb 2012
Thank you. Never thought about underlying sarcoma. Appreciate the words. I have found a surgeon after 3 months but surgery won't be for another 3 months.
Joined: Oct 2012
I was diagnosed August 3rd 2012, after having a biopsy of a spot that i have had as long as i can remmeber. My PCP did the biopbsy and called me with the results at the same time said that my appointment was set for Monday the 6th with a Plastic Surgeon that specializes in Skin cancer. At my appointment the surgeon went nto great detail of the condition and what needed to happen. Friday August 10th they removes a huge sectin of my upper right thigh and I wet home eith a wound vac while we awaited the pathology. The very next Friday they closed it up with a complex closure (no skin graft) I have to see a dermatologist every 3 months now and there are multiple doctors involved in my treatment. It has been a tough recovery and I am still not healed. If you are not comfortable with the way they are treating it, get on the phone and call around to every doctor you can find until you get someone that knows about it. Don't let anyone put you off of what your gut tells you.
Joined: Jan 2013
I was diagnosed with this type of skin sarcoma in 1996 with the tumor being on my toe. I went through 3 foot surgeries (first 2 left cancer cells in the margins) and I have been doing fine since. In 1996 there was no information available (in fact I was the 2nd person in my state to be diagnosed with the cancer). I google from time to time to see the updates available regarding the cancer. I just wanted to let people know that have been newly diagnosed with this type cancer that I have been fine for the last 16 1/2 years, just a few battle scars.