CSN Login
Members Online: 8

DFSP Dermatofibrosarcoma Protuberans

Fedeyks
Posts: 6
Joined: Feb 2012

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 ....

kyoungs
Posts: 3
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

Fedeyks
Posts: 6
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.

Anne12345
Posts: 1
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.

radtechbb
Posts: 3
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.

natmcg
Posts: 120
Joined: Jun 2012

Thankyou for reassuring us recently diagnosed DFSP people. There are a few of us in different places within this site that are first timers recovering from operations ( Mohs & wide excisions) and some dealing with recurrences.
There are quite a few posts regarding DFSP under the heading "sarcoma"
It wonderful to hear that you are doing so well. There has obviously been a lot uncovered about this rare cancer since you were diagnosed.
Hope you don't mind if I ask, how often do you have the area checked? Or does there come a time when the Drs say " ok you don't need to come back." Did you have any MRIs or CT scans to confirm you were cancer free.?
I known there are a couple of others I have been in contact with( DFSP friend is the heading we are under) that will be interested in reading your post here.
Thanks again
Natalie.

radtechbb
Posts: 3
Joined: Jan 2013

The physician that I was referred to (UAMS in Arkansas) had me do follow up for 3 years. The cancer was on one of my toes, so my hometown surgeon amputated the toe, the cancer cells were in the margins of the tissue.  I went back to surgery and had more tissue removed, still cancer cells, there was no more tissue to remove unless I had major surgery (initally it was talked about removal of about half my foot).  At that point I was referred to UAMS.  I did have an MRI only after the toe amputation, but before the final surgery.  The MRI just showed post operative changes, and was not helpful with how far the cancer had spread.  The physician at UAMS said that ideally the MRI would had been done first to see the progression of the cancer and planning would had been done from there.  My final surgery (where I had about 2/3 of the bone removed in my mid foot, taking as much tissue as they could, and forming my foot back together) only showed a few specks of cancer cells (most likely why nothing showed up on MRI) and the margins were clear.  I was told that <5% of cases will spread and the most likely place would be the lungs.  My family physician ordered a CT of the Chest just for my peace of mind, but I had not had any other diagnostic imaging studies. 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network