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Hidradenocarcinoma?

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Subject: Hidradenocarcinoma?
Date: 03/04/2003
My 21-year-old daughter was diagnosed with Hidradenocarcinoma in Feb. 2002. This was a tumor in the sweat gland of her vulva. The doctors say this is such a rare disease that not many people have even heard of it let alone know what to do about it. My understanding is that there have only been about 60 other women with this disease and there were no follow-ups on them after surgery to remove the tumor. Her doctors have consulted with doctors all over the world but still are guessing. She had surgery in March 2002 to remove the tumor and all surrounding lymph nodes (it had spread to one). In June another tumor showed up in the same place, more surgery. In July they found the cancer had spread to both lungs and her esophagus. She then started radiation of the pelvic area and chemo. In September she spent a week and a half in the hospital with radiation burns. Her chemo drug that she started with was Taxol and it seemed to be working for awhile but then quit and the tumors grew bigger in her lungs. She is now on Gemzar and we pray every day that it will work. I guess I am just wondering if anyone has heard of this disease or knows anyone that has had it that we might get some answers. Even the National Cancer Institute told us they had nothing on it. Right now my daughter is still doing pretty well. Her attitude is great. She is married and has a two-year-old son and from day one, she has said, "I'm going to be fine, I have a son to raise". This girl has been through hell but she just keeps on going, taking it one day at a time. She is my hero.

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