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What You Should Know About Fibroids that I Didn't What You Should Know About Fibroids that I Didn't

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Unread 07-16-2003, 02:04 PM
What You Should Know About Fibroids that I Didn't

Thanks for the info on the vitamin I will check out the health food store. Stay in touch Big Bear!
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Unread 11-15-2003, 12:10 PM

I'm glad those of you with LMS have gone to www.leiomyosarcoma.info/ You should be able to find information on an online support group for LMS patients. It's done through ACOR. This support group has hundreds of members, plus archives where you can research specific topics. Many of the women have similar cases, in which cancer was found in a fibroid.
Although a total hysterectomy is the best response to uterine LMS, it is not necessarily a cure. When I was diagnosed with a 9 cm LMS tumor in my vagina in July '02, I had a total hysterectomy, plus the removal of almost all of my vagina. I then had 6 weeks of daily pelvic radiation. But the LMS still spread to my lung and was detected in Jan. 03.
Encapsulated LMS can still spread.
It is imperative for LMS patients to have chest, abdomen and pelvic CT-scans every 3 months, for at least two years. I've never heard of a sarcoma specialist in the U.S. who recommends every 6 months. Please keep in mind that other oncologists, including gyn oncs, may have seen only a few LMS cases in their career.
If I had scans every six months, the metastasis in my lung might have grown inoperable, before it was caught.
Statistics show that people who go to sarcoma centers live longer than those who don't. If you've never seen a sarcoma oncologist, you might consider a consultation or, at the least, your regular doctor should consult with one.
The tumor tissue should be tested for a number of factors, including whether it is estrogen-receptive. I think all sarcoma oncs say hormones are bad for women with LMS, especially uterine.
I haven't been on this list for a long time, but I got a card today for my birthday, and I wanted to check out what people were posting about LMS. Sarcomas are very aggressive and deadly. We all deserve the best treatment possible.

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