Liposarcoma survivors

My name is Linda.  I was diagnosed with liposarcoma of the stomach five years ago.  My tumor was quite huge.  I also lost my left kidney.  As a result of radiation I have had nerve damage and live with chronic pain every day of my life.  It has been a very difficult road.  I just recently had a reoccurrence of the same tumor in the same past radiated area which was a huge disappointment.  The tumor is also behind my stomach and is of a slow growing grade.  I am very discouraged as my surgeon can't resect it as he would have to take out my diaphragm and stomach.

I hope someone will email me back and let me know your experience and where you went for help.  I need to stay within a sarcoma center.  I live in Seattle, WA.  God bless you.  Linda

On 12/29/2007 Cecea wrote:

My name is Linda.  I was diagnosed with liposarcoma of the stomach five years ago.  My tumor was quite huge.  I also lost my left kidney.  As a result of radiation I have had nerve damage and live with chronic pain every day of my life.  It has been a very difficult road.  I just recently had a reoccurrence of the same tumor in the same past radiated area which was a huge disappointment.  The tumor is also behind my stomach and is of a slow growing grade.  I am very discouraged as my surgeon can't resect it as he would have to take out my diaphragm and stomach.

I hope someone will email me back and let me know your experience and where you went for help.  I need to stay within a sarcoma center.  I live in Seattle, WA.  God bless you.  Linda

Hey Linda,

I don't know if this message will get you... it has been awhile since you have been online I think. I am a 22 year old female.. with Myxoid Liposarcoma... I have never met anyone or even heard of anyone with Liposarcoma... my doctors act like I'm a weirdo for having it.. haha. I have had it since I was 14 years old. My first tumor was 22 pounds and took up my whole abdomen and pelvis.. Since then they have been coming back about a month after each surgery.. which I have had 4 surgeries... about to do my 5th very soon... They also had to remove my kidney for the same reason... I would love to hear what your prognosis was and get some details... I'm here to listen!!! Let me know!!

Sara

Linda,

My name is George and I am sorry to hear of your battle with cancer.

I had a liposarcoma tumor the size of a football remove in 2003. They took my left kidney at that time. Since then, it has reacurred, located in my stomach. I had a tumor the size of a tennis ball remove from the inside of my stomach this past August. Unfortunatly it has come back only this time with several tumors. My surgion now wants to take out my entire stomach.

I have been seing a doctor, Sandra Wong, from the University of Michigan Hospital. She has done both of my surgeries and will perform this next one. She is, in my opoinion, the best sergion in the entire midwest reagion. As you know there are very few cases like ours, but Dr. Wong has seen most of the cases of sarcomas in this area. She is a very compient and skilled doctor. You can google her name and easily reach her at her office.

May God bless you as well,

George