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Avatar universal

leiomyosarcoma

In 2007 I had a hysterectomy for leiomyosarcoma.I was sent to a cancer center where I was given several ct scans at the last appointment my doctor told me that he hasnt found anymore tumors,unfortunately I lost my insurance and had to move. I really don't know if I am out of the woods yet because of lack of insurance.There was no further treatment and the only information I was given is that the tumors in the uterus were in the wall ,one was about 2cm and the other slightly smaller.I was told it could come back My question is what is next? Am I cured? and is there doctors in the San Diego area that treat this sarcoma?
2 Responses
Avatar universal
Hi Dawn ...  I looked up leiomyosarcoma.  It is not a gyn cancer.  What did your oncologist say to do for follow ups.  If I were you I'd get insurance immediately!!!!  This cancer should be monitored.  This is what I found.  You can google leiomyosarcoma and will be able to find out how this disease is treated.  The followig is what I found :  
About Leiomyosarcoma
Leiomyosarcoma is a form of cancer that affects the smooth muscle of the body. It spreads through the blood stream and can affect the lungs, liver, blood vessels, or any other soft tissue in the body.

LMS is a type of sarcoma which is a neoplasm of smooth muscle. Smooth muscle cells make up the involuntary muscles, which are found in most parts of the body: in the uterus, stomach and intestines, walls of all blood vessels, and skin.

Leiomyosarcoma is a very rare cancer. It makes up 7% of soft tissue sarcomas; in all, LMS affects 4 out of 1,000,000 people.

Presently there is no cure. Remission can be attained, but this rare cancer can reappear at any time. Because of its rarity, few doctors know how to treat it and it attracts very little research.

Links to Leiomyosarcoma websites:

http://www.nlmsf.org - The National Leiomyosarcoma Foundation
http://en.wikipedia.org/wiki/Leiomyosarcoma - Leiomyosarcoma on Wikipedia
http://www.lmsdr.org - LMSarcoma Direct Research Foundation
http://www.leiomyosarcoma.net - Internet Resources of Leiomyosarcoma
http://www.leiomyosarcoma.org.uk/welcome.htm - LMS
I know I posted some hard facts but you must take this disease seriously!! I hope this helps!  You are probably in remission.  Hopefully forever but you need to have regular exams.  This is the Ovarian Cancer forum.  It is also a monster of a cancer.  You  also need to be pro-active with your cancer.  Find out as much as you can and I'm sure you will be able to find a doctor in your area.  If someone knows of a oncologist that specializes in rare cancers in her area, please jump in.  I hope this helps. First thing is to get insurance!!!  Contact the oncologist that did the surgery and ask him some questions about your disease.  Best wishes.....Cindy
Avatar universal
I think you should contact the doctor and surgeon you had before you moved.  Get copies of all reports -- pathology, blood tests, CT scan results, etc. mailed to you.  You're entitled to them, and you need them for your new doctor.  By all means get the surgeon on the phone and ask all the questions you can think of as well.  

Then start calling hospitals and doctors in your area to get yourself in to see somebody.  A little research might give you some idea of what hospital(s) are good;  if you need help, go to that emergency room to get it.  

And, yes, if at all possible get signed up for insurance.  

Best of luck to you.  
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