Leiomyosarcoma.net
Title
Leiomyosarcoma treatment information
Description
About This Site, I'm not a medical person. I am married to a wonderful woman that has leiomyosarcoma. Way back in 1991, my wife had one of those "routine" hysterectomies and a week later our doctor informed us that she had leiomyosarcoma. He told us not to worry, that he got it all, it couldn't come back, no follow up needed, just what we wanted to hear from our doctor. He was wrong! Six years later she had a near fatal emergency surgery to remove a cantaloupe sized pelvic recurrence. Had our original doctor known that normal follow up for LMS was ct scans at 3 month intervals it would have been caught early and been a very minor procedure. The good news for us is that my wife has remained clear for over 5 years since and is now being seen by a doctor very familiar with LMS.
Advice, I have been studying LMS for over 5 years now, hoping to help my wife and possibly others as well. I know more about it than most doctors do, but I do not give any medical advice. Advice should only come from a sarcoma specialist familiar with LMS and familiar with you. Find a sarcoma specialist and preferably a sarcoma center. Dana-Farber, MD Anderson, Memorial Sloan Kettering, University of Michigan, are a few of the best, but there are more. Check medical universities. If you can't travel, find a local doctor that will confer with a sarcoma specialist and follow his treatment plan. There has been a lot of progress in the last few years in treatments, studies, and clinical trials. With the rarity of LMS, most doctors are not up to date like a sarcoma specialist is. Mistakes can be fatal. Ours nearly was.
On Line Support Groups, The best thing that happened for me was to find an on line support group. I instantly found people in the same boat as I, and people that were winning the battle. I needed that. I learned of the latest tests and treatments and got much needed support and encouragement. I started my own group almost 3 years ago and now have over 900 members, all LMS patients and care givers just like you. You can visit the group home page at http://groups.yahoo.com/group/lmsarcoma and join from there or join by clicking the button on the previous page. Once you become a member, you simply send an e mail to the list and it is mailed to all of the members. Or just sit back and read and learn. No one will even know you are here if that is what you prefer. You should be able to get all of your questions answered by people that have been through what you are now going through. A typical day has around 5-10 pieces of mail. You can get mail delivered individually or in a once a day digest form. You will also have access to the archives with over 8000 letters, links, photos, treatment guidelines, etc. at the home page. You found this site because you were looking for information about LMS. You can get a lot more information on the mailing list. Find out the latest in treatments and clinical trials. Learn what centers are offering what treatments. Find others that have already been through a treatment that you are about to have. Give it a try, you'll be glad that you did. It's free, of course.
