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From: Laurie (alulu44@aol.com)
Date: 13 Jun 2002
Time: 01:50:46
Remote Name: 172.194.207.5
In January, 2002, I went to the emergency room at the hospital because I had a fever of 102+. After several hours and several tests, my fever went down, but the doctors could not find a cause. The next day, my GP asked if I had recently had a pelvic exam. I made an appointment with my Gyn for my annual checkup. When she examed me on Feb 1, 2002, she felt a large mass (equal to 4 months pregnancy) and did an Ultrasound. Incomslusive, so I went for a more specialized ultrasound and an MRI. The radiologist could not identify ovaries vs uterus vs lumps. I had previously had fibroids off and on, but nothing large. Ten years ago I had a pituitary tumor removed, several sebaceous cysts removed over the years, and a large fatty tissue (Nerf-football size) removed from my hip, so I was not surprised by the new Mass. On April 1, 2002, I had a complete hysterectomy, including both ovaries, fallopian tubes, and several lumps, including 5 that had burst through the uterine wall. My uterus with LMS was the size of a soccer ball! Stage 4 LMS! I have felt very well since the surgery, but am now trying to decide when to submit to chemotherapy and where. My medical oncologist suggests 2 sessions of Ifosofamide (& mesna), then doxorubicin. My surgeon, gyn and various others say do it. But the CT-scans at 8 weeks showed no new growth and a pelvic exam indicated the same, so I am hesitant to jump into chemo right now. I also am trying to locate the hospital or cancer center that has the best experience and cure/response rate for LMS. Most of the NCI accredited comprehensive cancer centers don't even list LMS as one of their cancers. City of Hope, Sloan-Kettering, Harvard, USC and others. M.D. Anderson is one of the few that indicates experience with LMS. My doctors are at USC (no help) and Cedars-Sinai in Los Angeles (some experience). One doctor at UCLA has an article (research paper?). Where did you go for treatment? Any suggestions from out there? Please advise!