uterine leiomyosarcoma

Hi, I am new to the list, not sure I have all the tech stuff down - I had a TAH Jan. 21st after 1 1/2 years of serious problems, am a health advocate, and still my situation fell thru the cracks. The gyn had no idea there was a fist sized tumor in my uterus. They didn't know what it was - said for three days it was a fibroid gone bad, then came back with it being a leiomyosarcoma - they did not remove any lymph nodes or do staging. But it had not spread outside the uterus and was still contained. The path report indicated high mitosis and a high grade, although it didn't say what. that from my research would have to be a III - but I keep thinking this pathologist had never seen one of these (that was true). My first reaction (I am in rural Montana) was to call a doctor friend at UCLA - I am going there next week for further evaluation by a gyno-onocologist - they are in the process of re-examining the slides to make sure of an absolute correct diagnosis. I had a pelvic, abdomen, lung scan and they were clear. I have gone to an oncologist here to help manage the situation, he's just come from Johns Hopkins into our area to start a research facility.

I'm looking for survivors that would be willing to be support for each other. I went to a support group locally, but this type of cancer/sarcoma is so rare and so different, I know I need to talk with others about it. I also want to make darn sure I am aware of the very latest protocols, what has worked, the new oncologist is great and will help - so I can make very informed decisions about adjunct therapy.

I am 57 - and was already a cancer survivor. I had thyroid cancer in 1972 and 1980 - I received external beam radiation to my tonsils and adenoids in 1953 when pioneer medicine was "ablating" them with radiation instead of surgery! Look forward to hearing from you - V. in Montana and maybe the only leiomyo person in the state...

Oneinamillion,

So sorry about your diagnosis--and glad that you'll be seeing that gyn/onc in California. You're wise to be so proactive!

This site is marvelous--comforting, supportive, encouraging. You'll find lots of friends here, not only now, but after your surgery as well.

I hope you are able to find others who have a similar diagnosis, and please know that you'll be in my thoughts and prayers.

Blessings.
Marlene

Hi--

I think someone posted about this a couple of days ago. Maybe go back a page or two in the postings and you'll find it. She cited a couple of websites to check--you may want to take a look.

HI!

I did a search of the cancer concerns boards for leiomyosarcoma -

The search results are here

http://www.hystersisters.com/vb2/sea...der=descending

There are a number of ladies with the same diagnosis - you might want to PM them.

Let us know how your consults go and what further treatment is recomended.

Dorrie

Hello,

Leiomyosarcoma is rare and it is a cousin of my rare cancer.
here is a link to a support group.

http://health.groups.yahoo.com/group/Leiomyosarcoma/

I belong to one that deals with my cancer and it is a tremendous help to talk to others who are going through the same issues you are faced with. I feel as if I have known and loved the girls in my group forever. It also is a great source for treatments, drugs and clinical trials.

I hope this helps you.

Hi,
How did your visit to UCLA turn out? I am curious because I to may have uterine LMS. At first the gyn/onc said it was way to small to be that. They found it through a fluke. Well it is now growing but still only 2.4cm. I will be having a TAH most likely next week. I am anxious to know how everything went for you.
Patti