DFSP is the rarest of the sarcomas making up less than 1% of all sarcoma diagnoses.In fact only 1-4 in a million people worldwide is diagnosed with this disease each year. It is a sarcoma of the inner layers of the of skin and soft tissue. It occurs most often in the trunk then in the limbs and most rarely the face and head. There is a second type called DFSP-FS. That means there are fibrosarcomatus changes and that it is more aggressive. This cancer is only locally aggressive. After 10 years and many recurrences it can spread to the lungs very rarely.In these cases Gleevec may be used to treat it. Otherwise surgery and radiation are the best treatments we have. It is caused by a gene trans-location 90% of the time. Basically that means the two genes trade places causing havoc.Shockingly I have found no info on this disease at the American Cancer Society. The National Cancer Institute has e mailed me some links I will share on the links page. UPDATE: I have just learned from the radiation oncologist that Dana Farber Brigham and Women's Cancer Center is doing a study to see if benign spindell cell tumors like hemangiomas and port wine stains may increase the risk of DFSP. I learned this because I asked since I had a hemangioma on top of my head when I was a kid and in my research learned it was spindell cell just like DFSP. so, please tell your doctor about this study and if you had one of these birth marks.
NEWS: My latest MRI was perfect. I have now been DFSP free for 1 1/2 years.
Our mission statement is very simple: We who have this cancer want educate the public about it. We NEED awareness if there is to ever be better treatments for our cancer.
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