Dermatofibrosarcoma Protruberans, also known as DFSP,

is a soft tissue sarcoma that can occur on various parts of the body.

Also considered a nodular melanoma?
Hello. In January of 1999 I was diagnosed and treated for this type of cancer.
Dermatofibrosarcoma Protruberans, also known as DFSP, is a soft tissue sarcoma that can occur on various parts of the body.  The growth that I had was on my anterior thigh and never caused me any pain or discomfort.  Initially, I thought that the pea-sized growth was a pimple. An entire year passed by and the growth, still pea-sized, appeared pigmented on the surface. At this point, I knew that it was time to have it looked at so I went to a dermatologist. My dermatologist was not sure what type of growth I had and suggested that I visit a plastic surgeon to have it removed. I had the growth removed by the surgeon, he sent the sample out for a pathology report, and that is when I knew that I had DFSP. From that day forward, I have been seeing a surgical oncologist. The oncologist removed the remaining parts of the growth and the plastic surgeon who did the initial excision performed reconstructive surgery on my thigh (two times) prior to that. I have a six-inch scar on my thigh and I may go (the decision is entirely up to me) for additional reconstructive surgery in the future. Now I see my oncologist three times a year for follow-up visits.

As of August 2001, I remain cancer free and I am doing very well. If there is anyone out there who is reading this message, please know that this type of cancer can be treated with great success. salsahead
 8-01
 
I initially had a "sist" removed on May 31, 2002, which was sent to a pathologist, only to return that I also have this type of cancer.
I am uncertain as to some of the conclusions reached by my doc and the surgeon, and would like to be seen by a specialist in this area of cancer. I reside in Indianapolis, Indiana. What should I look for? Juliet 6-02
 
I was diagnosed with DFSP in July, 1999. The tumor was in my upper left arm. An orthopedic oncologist did a wide margin excision to remove the tumor. Now I suspect the tumor may have reappeared. DFSP can have up to a 50% recurrence, according to some of the info I have found. I'm having problems getting the new growth diagnosed. Everyone my doctor has sent me to is not familiar with this, and doesn't want to do anything. The doctor who did the original excision cannot be located. Can anyone tell me what type of doctor they have seen for this type of tumor? ljbb
 
SO GLAD TO FINALLY FIND SOMEONE THAT HAS HAD THE SAME CANCER AS MYSELF. I HAD MY SURGERY IN JAN.1994. IT WAS ON MY HEAD. I HAD MY SURGERY AND RADIATION AT SHANDS HOSP. IN GAINSVILLE. STILL DOING GOOD.

PLEASE DON'T WASTE YOUR TIME GOING TO PRIVATE PHYSICIANS WITH THIS VERY SERIOUS CANCER. IF YOU HAVE A MAJOR HOSPITAL WHERE YOU LIVE THAT HAS A CANCER CENTER GO THERE. I LIVE IN FLORIDA SO IM PRETTY OUT OF TOUCH WITH OTHER STATES HOSPITALS. WE HAVE SHANDS IN GAINSVILLE AND MOFFET IN TAMPA BOTH GREAT FOR CANCER TREATMENT HERE IN FLORIDA. THIS IS A VERY SERIOUS CANCER AND SHOULD BE TREATED BY THOSE WITH EXPERIENCE WITH IT. BEST OF LUCK TO YOU BOTH, CINDY [SOBLESSED
 
Even oncology surgeons aren't very familiar with treatment methods for DFSP; mine recommended a treatment more appropriate for basal cell carcinoma than dermatofibrosarcoma protuberans.
Over the last year, the tumor on my upper arm--which originally appeared in 1999 as a 3-mm white nodule--had grown to 1.6 cm, and became dark and hairy and ugly enough that the dematologist agreed to have this "benign dermatofibroma" excised for my cosmetic preference. Pathology revealed DFSP, so we have to go back in and excise the remnants, leaving a negative margin.

Problem is, my oncology surgeon, head of all oncological surgery for Kaiser Permanente in Northern California (a HUGE HMO out here), is recommending simple excision with only an 8-mm to 1-cm negative margin. I can't find any support for this treatment in the medical literature. My Web research shows the accepted treatments to be (1) wide-margin excision, i.e., at least 3 cm of negative margin, or (2) preferentially, Mohs micrographic surgery, which most articles recommend as the treatment of choice. With Mohs, the surgeon examines each little slice of tissue under the microscope as s/he goes, so s/he can be sure he got it all out--and also, only remove as much tissue as necessary. It is thus a long, tedious, more expensive surgery, but recurrence rates drop to less than 6%, compared to 10-20% for wide excision and 45+% for standard excision.
 

Fortunately, my HMO does offer Mohs, and so today's my appointment to convince the surgeon to put me on the Mohs waiting list.

There is some speculation in the medical articles (certainly no definitive proof) that the surgical procedures themselves can help spread this cancer in the blood, so it seems to me that the risk of waiting 2 months for Mohs is less than the risk of getting the cheaper surgery immediately, but having the DFSP return in a few years and having to repeat surgery--and, at an unlikely worst, have it metastasize. (Very unlikely, but once it spreads, you're a goner--though one lady had DFSP successfully removed from her lungs.)
So...if you're looking for treatment, I'd start first with some Internet research and second, try to find a medical center that performs Mohs micrographic surgery.
Best wishes,
Deb  9-02  dadunster
 
I was diagnosed with dermatofibrosarcoma on my face. in 1996 . I just now found this web page! I have had 5 surgs. All by plastic surgeons. All at the states largest city University. I have never (knock on wood) had a reoccurrence, just a scar. When I was told I was so upset my physician arranged for a girl who was diag. with the same scheduled at the same time as me. I stumbled upon her and we talked, she had scars all over her face from the removal of the spreading tumor. Hers went crazy. I guess this was the docs way of letting me know that it could be worse. But I am thankful to him for that day. Makes me feel a bit lucky.
I HOPE THIS HELPS YOU TO FEEL A BIT LUCKY. And assured that 6 years, going on 7 years cancer free for me can be hope for us both!!! This all makes us look at life differently and thankful that we have ours.

LisaMarie 6-03
 
 
I was diagnosed with DSFP 06/03. I had gone into a dermatologist in the early 90's about a growth and was told it was a fibrous cyst. All doctors since agreed with the diagnosis. Finally, it had grown sufficiently large to become bothersome. Luckily I got to the right dermatologist that recognized that it was cancerous. I was referred to Shands in Gainsville, FL where the tumor was removed in August. The excision was a 3.5 cm margin, was clean, but very close in one quadrant. Keeping my fingers crossed for my 3 month check up tomorrow.  fllljohn 11-03
 
Hello, I'm in Sacramento, CA. I was diagnosed two weeks ago. I pushed to have the Mohs procedure and they were able to get me in within one week. I go back tomorrow to have my stapeles removed. I had to have two more biopsies on marks that had recently shown up on my stomach. That's were the original leison was found. It was one inch by one inch and they had to remove a 4cm X 3cm round patch from me all the way down to the muscle. It took a total of nine hours and they used a local. I'm being referred to an oncologist to ensure that the DFSP has not spread. All the research I can find states that it is rare for DFSP to spread but when it does it attacks the lungs and the lymphnodes. I need to be sure. However, I have felt that I was the one educating my doctors regarding DFSP and I feel the biggest mistake they can make is to treat DFSP as a basal cell cancer. I found on EHealth that it actually falls under the melanoma category. Under the melanoma, there are four different types, DFSP is the nodular type.

I was the youngest person in the Skin Cancer Surgery Center (36 years old) and it scared me. I would like to hear from anyone who knows any more about this type of cancer and what they have had to endure. thewrights 12-03
 
HELLO THEWRIGHTS, IM SORRY TO HERE OF YOUR RECENT BATTLE WITH CANCER. I HAD A SURGERY AND RADIATION TREATMENT FOR THE SAME CANCER IN JANUARY OF 1994 AT SHANDS HOSPITAL IN FLORIDA. I HAVE NOW BEEN CLEAR FOR TEN YEARS!! I KNOW HOW IT FEELS TO BE YOUNG ,I WAS 37 MYSELF. IT DEFINITELY WAS SCARY BUT IT TRULY OPENED MY EYES TO SEEING THE TREASURE IN LIFE AND THE FRAGILITY ALSO. I PRAY THAT YOU WILL HAVE THE LEVEL OF SUCCESS THAT I WAS BLESSED WITH. GOD BLESS YOU, CINDY 1-23-04
 
Hello. As of January 29,2004 I was diagnosed with this type of cancer. (DFSP) I'm 36 years old and trying to find out more about this type of cancer.
I'm going Feb. 6 for mohs surgery to remove it. It's on my head and I've had it for 5 years or longer. Several doctors told me it was nothing to worry about. Now several years later I finally got a doctor to remove part of it and found out it's a tumor. Just want to find out how others deal with this and what treatments are out there. Trying to research all I can for the best outcome.
Thanks for all replies. dhorath  2-5-04
Well I had my first surgery. Now I'm going to see another doctor to reconstruct my head. Because they had to remove so much skin on my head. Plus it's gone all the way to the skull cap. Not sure about all thats in store for me right now but being very strong. Knowing that a positive outlook is what I need to believe. So I'll keep everyone posted on my progress. This is such a shock to find out and to try to deal with. But I know I'll get through it. God Bless Everyone. dhorath 2-15-04
 
On July 28th I was diagnosed with Dermatofibrosarcoma Protruberans. The tumor was on the right upper arm of about 6cm in size and unfortunately, they only were able to remove 1/2 but further surgery will be done to excise out the remaining tumor. I should have more information on Friday the 13th of Aug to hopefully stage this cancer. I am nervous because I read this is a low-grade cancer (great) unless it spreads (not so great!) I hope to learn more from all of you that have faced the same diagnoses.
Charlize  8-9-04
 
I doubt that "salsahead" is still reading this message board, be if he/she is I'd be interested in emailing you directly. I also had DFSP recently diagnosed and treated on my knee. I am particularly interested in learning more about your use of a plastic surgeon ... who recommended that, for what reasons, etc. mr4242us
 11-3-04
 
All that rare?
Dermatofibrosarcoma Protruberans or DFSP is a soft tissue sarcoma cancer
 
 

 

1.

Are these cancers a 'cluster?' Are they all that rare?

... Dermatofibrosarcoma Protruberans DFSP,. a nodular melanoma ... It is primarily an autoimmune problem, and would first show up as FATIGUE that the ...

http://home.gci.net/~blessing/pages/allthatrare.htm

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repost 3/21/08