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My name is Tania , I am an average person, 51 years of age. I am someone's child, wife, mother, and grandmother, and at the age of 49 my life became a nightmare. Two years ago, during a routine examination with my gynecologist something was found on my ovary. After some tests were performed, I found myself sitting infront of a surgeon discussing a total hysterectomy. But, that was not bad enough. After the surgery I was told that the tumor was NOT on my ovary but on my small intestine. The doctor took a frozen section to be biopsied. I was told that it looked benign, however by the end of the week I was told that I had a VERY RARE CANCER called LEIOMYOSARCOMA STROMAL TUMOR. After seeing a few oncologists I was told that my type of cancer does not respond to chemotherapy or radiation treatment. The only thing that could be done was surgery to remove it , if operable. I had undergone the surgery and was cancer free for 1 -1/2 years, but then it returned - first on the right lobe of my liver, two months later in the middle of my liver, and two months after that on the left lobe of my liver. My oncologist tried to get me into a CLINICAL TRIAL STUDY but it could not be done because the Clinical trial study took only 6 patients. I think it is very sad to think that about 1000 people get this rare type of cancer, but only 6 people could go into a trial. Most people are not aware that this very rare form of cancer exists, because the emphasis is mostly on well known cancers. I wish that I could help in some way to make the public aware that more funding should be directed into Research for this type of rare cancer *LEIOMYOSARCOMA STROMAL TUMOR* I am not a person in the public eye, in the entertainment business, politics, or in the media in anyway where the emphasis would be put on this because of who I am. I am only an average person, living with a killer. If more funds could be directed into Research for this very rare cancer which has no cure or treatment as of yet maybe it can help someone in the future. More patients should be given a chance on life with a Clinical Trial I feel very helpless because being just an average person and not a person whose name would automatically raise funds for research. I would like to do something, yes for selfish reasons and hoping that in the time I have left something might be discovered that could help me - but also help someone in the future to get another chance on life. If there are any persons wanting to make a donation for the research of LEIOMYOSARCOMA CANCER - please forward to Sloan Kettering Memorial Hosptal in care of Dr. Ephrim Casper. in New York Thank you for your attention to my letter and my appreciation for anything that can be done to get the word spread about this rare cancer that needs attention... Sincerely, Tania


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