My Story

In July of this year (2010) I had what we all thought was a lypoma removed from my left arm just below my elbow. My surgeon realized very quickly this was not a lypoma (benign fatty tumor). This was something else entirely. The pathologists at the University of MA could not figure out what it was beyond that it was a spindle cell tumor. Brigham and Women's hospital told my surgeon that it was in fact DFSP-FS a VERY rare cancer. He did one more surgery August 2nd then had to send me to a dermatologist for Mohs surgery. They wanted me wide awake for this surgery. I said NO and encourage all to say NO. This is a CRUEL surgery awake. You are your best advocate so stand up for yourself.  There is NO need of that since sedation is easy to do.  Mohs is a surgery developed by Dr.Mohs that looks at the whole margin not just parts of it and they do the pathology during surgery. I had that done on September 28th. I saw my oncologist yesterday Oct. 28 and have to have an MRI of the arm and a chest CT next Tuesday and see my oncologist again. I need 3 months to heal before Rads can begin. I had a wonderful oncologist before as I had Hodgkin's Disease in 1999. So, I went back to him. UPDATE: I do not need rads. I saw the radiation oncologist and he said since I have clear margins I have a 95% chance of staying cancer free for 5 years. After that if it comes back I will have more surgery unless it comes back in my joint then I will lose my arm. I will keep you updated.