I Just Found Out I Have Sarcoma

Hi Everyone,
I just found out that I have sarcoma. I had a very big operation, they took out major parts of my body (stomach gallbadder etc.) They never thought it was sarcoma but it is and very aggresive. I am going for a second opinion because my doctor said to give me chemo, it just would not work. So now I have to sit and wait until it goes to my liver then they operate again. I am sure you all have felt (and maybe still do) the tension, sleepless nights etc. If anyone can help me cope please write back. Thank you all, Lea

I am so sorry to hear that you have this dreadful disease. I was diagnosed on 9/18/04 of leiomyosarcoma of the ovary. They thought it was a fibroid. Discovered at a regular physical on 8/26/04; complete hysterectomy on 9/14/04; diagnosed with lms on 9/18/04; ct scan of abd, chest and pelvis 10/06/04. It is gone for now, but is a fast growing cancer and recurance rate is great. It is very difficult to deal with reality. I have learned that ct scans every 3 months and doctors every 3 months is the best. Also, there is a group that I joined. They all have lms. Is this what you have? I am Charity

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

Yes, that is what I have. Mine was in the small intestine. They cut out most of my stomach, pancreas, gallbadder and 3 parts of my small intestine. It is very hard to deal with this type of illness. It is nice to be able to chat with others about this illness.I am going to join the web site too. talk to you soon, Lea

Lea,
You mentioned that you have sarcoma in the GI tract. I'm wondering if you have gastrointestinal stromal tumors (GIST)? This used to be classified as Leiomyosarcoma, but is now separate. It is fairly sucessfully treated with the new drug Gleevec. There is a test called "c-kit" which tests for GIST.

I also have leiomyosarcoma. It all began years ago as a uterine fibroid. I have gained much knowledge and support by joining the ACOR support group for LMS. If you haven't joined, I would highly recommend it. Go to www.acor.org and click on mailing lists.

I wish you good luck!
Beth in California

Sorry that you have just found out about your Sarcoma. Have they identified the type of Sarcoma? There are many and some respond to certain types of treatments when other do not. I have Retroperitoneal Sarcoma. A large mass was found in my abdomenal area. The mass was the size of a soccer ball. I had radiation first followed by an operation. The mass weighed 11lbs. I had my right kidney removes, plus a small part of my liver. Part of the tumor was left as it had wrappe around the vina cava and was too dangerous to remove. I have just completed my 2 year following the operation and all is stable for the moment. I visit MD Anderson Cance every 90 days for follow up observation. I was told that chemo would not work on this type of cancer unless as a possible last resort. The improvement did not out weigh the effects of the chemo. My only suggestion is to make sure you identify your specific type of Sarcoma and do as much research as possible...Remember God loves you and will help you deal with this.
J Allen

Thanks John, You too have been through a lot. God Bless all of us.

Dear Lea,

I was diagnosed November 03 while going in for a fibroid in my uterus. I had been seeing my GYN for 6 months of bleeding. The doctor performed a hysterectomy but left a ovary in because of my age. (42) When pathology came back with my diagnosis revealing a very high grade as well large tumor. As soon as possible 6 weeks after surgeryI went in again
for exploratory surgery as well removal of the left behind ovary. This cancer like hormones.
All my 9 biopsy's came back fine. I apparently was extremly lucky accordingly to my
oncologist. I am Stage 1 at this time and extremly frightened. There was a sign of vascular intrusion from my tumor on my pathology report. This makes it very hard to relax,I understand what you are going through.
I still have sleepless nights. I have 17 and 15 year old daughters. Not everyone understands what it feels like to live with this. I take medications to keep my nerves calm. I as well feel like I am just waiting for it to come back. I have gone back to work, this helps but I still have my private moments of tears, fears and worries. There is not much information out there on Leiomyosarcoma. If you or anyone knows of any, I sure would love to know where to go.
For now I contiue to keep positive thoughts as you should too. I am sorry you have to face this disease. I am having trouble getting into ACOR's websites mailing lists. I have written them. I think talking with people who are going through the same thing helps. I havent been able to find a group yet.You are all in my prayers.I will have my 1 year in February.
Renee in California

Hi,
My wife had had a retroperitoneal sarcoma removed 12-03-04 at Anderson. Just wanted your take on that place and the sarcoma docs.

Bob

We have just been to MD Anderson and were sent home. Interested to know which doctor you saw. We saw Dr. Burgess. We are to start standard chemo next week using DTIC and Adriamycin. My husband has the tumor and it is as large as yours was. Interested to know what doctor removed the bulk of your tumor and still left part behind. We were told this couldn't be done. My husband's tumor also has invaded the vena cava, pancreas and duodenum.

My dad was just diagnosed with sarcoma in the abdomen and spine. We also went to MD Anderson and was sent home saying they could not operate. We are now waiting for radiation. They are getting really discouraged.