Rose Ripka
I'm so sorry to read about your diagnosis. My 39 year old sister was having severe abdominal pain for about 9 months until they finally discovered a tumor in her small intestine. It too turned out to be leiomyosarcoma. It has been 9 months since her diagnosis and she is still cancer free. I would like to let you know about a L-M-Sarcoma mailing list that I've been subscribing to that is an invaluable resource. People from all around the world with LMS post to the list with treatments, chemos, surgeries, doctors, successes, failures, feelings, etc. Several women have also had a fibroid removed only to discover it was LMS. The site is www.acor.org/type and from there you can subscribe to the mailing list. Another informative site is www.leiomyosarcoma.org. I've learned from the list that it is very important to go to a sarcoma doctor who handles hundreds of sarcoma patients vs. a ob-gyn oncologist who may have never seen a case. The other important thing I've learned from the list is that you should receive CT-scans every 3 months for the first 2 years and every 6 months up to 5 years and yearly after that. These topics are discussed in great detail on the list and I know it has helped my sister tremendously in making decisions about her course of treatment. I help this has been of help and I'll keep you in my prayers!