DFSP Dermatofibrosarcoma Protuberans

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 said:

thankyou radtechbb
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.

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. 

donna21 said:

DFSP newly diagnosed

I had a "cyst" on my lower back for about 4-5 years.  Went to dermatologists and MD and all said nothing to worry about.  I finally had it removed and to my shock was diagnosed with this very rare disease.  The pathology report says that it "appears to be completely removed" I am terrified that it might've spread to my other organs.  I am scheduled to see a dermatologist with Memorial Sloane Kettering in April, but I'd like to go sooner.  I'm very stressed over this as I am a smoker and am petrified it travelled to my lungs.  Should I go for a chest x-ray first or wait and see what my new doctor advises?  

 

Hi donna21,

Had this for 6 years my dermatologist said it was ganglion cyst. Finally I wanted it removed and she did a biopsy of the top piece of skin. Came back cancerous. Didn’t know type. I went to general vascular surgeon to have it removed. Came back as dermatofibrosarcoma protuberans. Now I am seeing an oncologist at M.D. Anderson Cancer Center at Cooper Hospital in Camden, NJ.  Even thought the surgeon report said excised meaning they got it all the oncologist wants me to have a chest x-ray and an MRI of my shin where it was. She said just as a precaution.  Hope this info helps. 

Lisa