HysterSisters.com is a massive online community with over 475,000 members and over 5 million posts.
Our community is filled with women who have been through the
Hysterectomy experience providing both advice and support from our active members and moderators.
HysterSisters.com is located at 111 Peter St, Toronto, Canada, M5V2H1 and is part of the VerticalScope network of websites.
With free registration, you can ask and answer questions in our HYSTERECTOMY forum community, get our FREE BOOKLET, access Hysterectomy Checkpoints and more.
You are not alone. The HysterSisters are here for you. Join us today!
|
|
uterine leiomyosarcoma
 |
 
02-12-2004, 02:45 PM
|
|
|
Posts: 2
Hysterectomy:
Surgery Type: TAH
Ovaries: Removed both
|
|
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...
|
Sponsored Links
|
Advertisement
|
|
 |
 
02-12-2004, 05:30 PM
|
|
|
Posts: 1,359
Hysterectomy: February 15th, 2000
Surgery Type: TAH
Ovaries: Removed both
|
|
uterine leiomyosarcoma
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
|
 |
 
02-12-2004, 05:37 PM
|
HysterSister
|
|
Posts: 605
Hysterectomy: January 19th, 2004
Surgery Type: TAH
Ovaries: Undecided
|
|
uterine leiomyosarcoma
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.
|
Sponsored Links
|
Advertisement
|
|
 |
 
02-12-2004, 05:57 PM
|
 |
HysterSister
|
|
Posts: 2,269
Hysterectomy: January 7th, 2002
Surgery Type: TAH
Ovaries: Removed both
|
|
uterine leiomyosarcoma
HI!
I did a search of the cancer concerns boards for leiomyosarcoma -
The search results are here
https://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
|
 |
 
02-13-2004, 07:26 AM
|
|
|
Posts: 62
Hysterectomy: December 13th, 2002
Surgery Type: TAH
Ovaries: Removed both
|
|
uterine leiomyosarcoma
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.
|
 |
 
06-24-2004, 02:00 PM
|
|
|
Posts: 8
Hysterectomy: July 1st, 2004
Surgery Type: TAH/SAH
Ovaries: Removed both
|
|
uterine leiomyosarcoma
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
|
 |
Similar Threads
|
From This Forum |
From Other Forums |
4 Replies, Last Reply 05-10-2010, Started By Riariv 19 Replies, Last Reply 02-04-2010, Started By kbranoff 3 Replies, Last Reply 09-17-2008, Started By Aleweast 2 Replies, Last Reply 07-04-2007, Started By jaminicoke 2 Replies, Last Reply 02-02-2007, Started By VeryCherry27 5 Replies, Last Reply 12-14-2006, Started By Marquise 4 Replies, Last Reply 06-29-2006, Started By tillybear8 3 Replies, Last Reply 01-22-2005, Started By ekmurch 0 Reply, Started By maier 5 Replies, Last Reply 06-24-2004, Started By tsalagi 16 Replies, Last Reply 05-24-2004, Started By bxhill 5 Replies, Last Reply 01-25-2004, Started By MercyEmm 6 Replies, Last Reply 11-28-2003, Started By noodles8861 0 Reply, Started By RareOne 13 Replies, Last Reply 11-16-2003, Started By savana 1 Reply, Last Reply 02-14-2003, Started By jewie |
4 Replies, Hysterectomy Options and Alternatives 0 Reply, Cancer: Stories of Courage 10 Replies, Preparing for Hysterectomy (pre hysterectomy) 2 Replies, Hysterectomy Options and Alternatives |
|
Advertisement
Hysterectomy News
TODAY'S EVENTS
Calendar -
Hysterectomies -
Birthdays
Request Information
I am a HysterSister
Your Hysterectomy Date
$vbulletin->featuredvideos is not an array!
Advertisement
Advertisement
|