Leiomyosarcoma

My sister was diagnosed with Leiomyosarcoma December 2008.  She had a hysterectomy 10 years ago because of non-cancerous fibroids.  She was on Premarin for 10 years afterwards.  They originally thought this new pelvic mass was leftover fibroid tissue growing since she no longer had a uterus.  Turns out it was stage iv high grade tumor.  She is currently on chemo.  -- Gemzar & Taxotere -- she has nodules on her lung and liver that are still there after 4 rounds of chemo.  I keep thinking that she had this 10 years ago and they missed it.  How do you have a uterine cancer with no uterus?

Hi, I'm a 7 yr. stage IV uterine LMS survivor.  She most likely had LMS in the uterus and they dropped some of the cells in the pelvic cavity where they were dormant for a few years.  The lung mets got there by blood of course.  LMS travels by blood.  Your sister is now stage IV which is as serious as it gets.  I belong to an LMS online support group of hundreds of LMS families.  Please join that to get the most info on treatments.  Join here:  ACOR L-M-Sarcoma
http://listserv.acor.org/archives/l-m-sarcoma.html

Uterine LMS is (ULMS) is often stimulated with estrogen.  She needs to ask her doctor to order hormone receptor tests on her tumor.  If it has estrogen or progesterone receptors... she can take aromatase inhibitors, like breast cancer patients.  ULMS has 2 different clinical trials with aromatase inhibitors.  However, her doctor can prescribe them without being in a clinical trial since this drug is already on the market.  BUT she most have the receptors to benefit from it.

It's really, really important to refer to ULMS as a SARCOMA or uterine sarcoma rather than "uterine cancer."  Uterine carcinomas are common, but have completely different treatments, which don't work for ULMS.   Many doctors treat ULMS incorrectly.  She needs to be seen ASAP for a consult or second opinion at a MAJOR SARCOMA CENTER.  You will have to travel - there are not many of them.  But this is crucial to getting the correct treatment plans for her local doc to carry out at home.  Here's the sarcoma centers:  http://www.lmsdr.org/centers.php  .

 Please join the above list... introduce yourself and ask questions.   There's a lot to learn, but we also have a lot of answers.

Lotsa Love,
Sharon in San Francisco    www.LMSdr.org

1/2002 dx ULMS (fibroid) MI 10/10 hpf, high grade
1/2003 1 L lung met removed by VATS
9/2003  ovaries removed after tumor tested 99% Er and Pr positive
1/2004  vaccine trial at Dana Farber - didn't work
5/2004  1 met in chest lymph node & 1 met in L lung removed by thoracotomy
5/2004 started Arimidex (AI) for 99% estrogen & progesterone receptors
NED ever since! (no evidence of disease)

No chemo, No radiation, No angiogenesis inhibitors so far.
Just 3 surgeries & an aromatase inhibitor (AI) estrogen blocker, Arimidex.
NED since 5/2004 - since taking the AI.
Fingers crossed!
.......................................

 

On 5/27/2009 annamc wrote:

My sister was diagnosed with Leiomyosarcoma December 2008.  She had a hysterectomy 10 years ago because of non-cancerous fibroids.  She was on Premarin for 10 years afterwards.  They originally thought this new pelvic mass was leftover fibroid tissue growing since she no longer had a uterus.  Turns out it was stage iv high grade tumor.  She is currently on chemo.  -- Gemzar & Taxotere -- she has nodules on her lung and liver that are still there after 4 rounds of chemo.  I keep thinking that she had this 10 years ago and they missed it.  How do you have a uterine cancer with no uterus?

Thank you so much for all the information.  My sister is on SSI and medi-cal which limits her regarding a Sarcoma Center.  I have contacted a couple -- we'll see what they say.