Liposarcoma in abdominal area

Mom2ThreeGirlsFL

My cousins has been battling

My cousins has been battling that awful cancer for years now. She has had 6 surgeries and has tried several didferent trials and treatments. I can see if she's willing to let me share her email with you as she has been going trough this for 10 years or so now and lived at least 5 years past the time frame they gave her. Best of luck to you as I know it is a difficult one to deal with. Prayers are with you 

terrypris

nanapat6225 said:

Tumor in stomach wrap around colon

Read your post,In May of 2013 ,I had bad pain in my stomach
coun't keep food down and my stomach was bloated.

I went to the Er thinking flu wrong! after test I was told I had a tumor weighted a whopping

20 pound it was wrap around my colon with a main vein running right though the middle
of the tumor it took all my stomach wall and caused acute kidney failer. I was taken to Shands

Cancer ward 300 miles from home spent 3 day doing mRI ,XRAYS ECT. then went home for the weekend.
 ame back Mondayfor 7 hour surgery. Had radiatiation treatments was told it was benign but so rare must be watched

Here it is 18 months later now I need a colon examne my stools go from runny to hard

blood in stool  and bloating I am afaid it's back or it never completly left.

liposarcoma in stomach

I hope this will help you and others who are facing the same problem.  In 2000 I was told that I had a mass in my stomach, it wa remove  with surgery, after surgery the doctor told me that I needed cemo. I could not believe it cause I have never being sick of any thing so severe.  I had 6 treament of cemo.  After three around of cemo I was told that there were no signs of sarcome.  but he wanted me to take 3 more treatment.  In 2012 I started feeling sick of my stomach. Went to he hospital and they could not find anything wrong.  I went to see another doctor and was given ct and mri and was thold that I was showing 3 tumors.  I was send to a special doctor and I was told that there was nothng he could do for me, because I had to many tumors. I went to three other doctors and was told the same report. one doctor  wanted to give me chemo  I went to another one and he wanted surgery, For some reason I did not believe what they were telling me becasue nor of them could tell me what I really had , they kept telling me that  they were not sure what it was.  They did not think that I had what the first doctor said back in 2000.   My church postor advise me to go to M.D. Anderson, Houston Tx.

M.D. anderson send me for a bioposy and it showed nothing. In other words, no cancer cell, but I was  showing tumors, but they don't know what kind it is.  I have had 3 bioposy and it does not show what it is. They tell me that it is low grade sarcoma. It is some thing that grow very, very slow. M.D.Amderson does not, and will not perform surgery. I was told that it will get worse .

Last month M.D.Anderson told me there was nothing they could do for me. I am showing tumors. The only thing they have done is having a CT every 3 months.  Since 2012. And it is hard for me to believe that there no one can do any thing for me.  I went to a place call "The Start Center"  all they tell me that they want me to take part in a clinical research study , but the treatment will me hard. and I am gong to have ct every 6 weeks, That is to much for my body.  Yesterday I  received a letter from M.D. Anderson asking me to also take part in a study.  So that is where I am right now. Praying for an answer. If they tell me that there is no treatment for me. Than should I take part in any kind of study. That is my question. 

It is a very hard situation, to know that I have tumors growing in my body. What keeps my going is my faith in God. He have plans for me. And only He can heal all of us. I will continue serving Him. He is faithful, and He will heal me one way or another.  I wold like to hear from some one that is facing the same problem I am facing. God bless you.

HappyNess

Liposarcoma

i am elsa, 1 St  time on line, same area, now is reoccurrance, 2 nd surgery fail, now on chemo. Not sure if will work.

like to know how have you been

armayn

terrypris said:

liposarcoma in stomach

I hope this will help you and others who are facing the same problem.  In 2000 I was told that I had a mass in my stomach, it wa remove  with surgery, after surgery the doctor told me that I needed cemo. I could not believe it cause I have never being sick of any thing so severe.  I had 6 treament of cemo.  After three around of cemo I was told that there were no signs of sarcome.  but he wanted me to take 3 more treatment.  In 2012 I started feeling sick of my stomach. Went to he hospital and they could not find anything wrong.  I went to see another doctor and was given ct and mri and was thold that I was showing 3 tumors.  I was send to a special doctor and I was told that there was nothng he could do for me, because I had to many tumors. I went to three other doctors and was told the same report. one doctor  wanted to give me chemo  I went to another one and he wanted surgery, For some reason I did not believe what they were telling me becasue nor of them could tell me what I really had , they kept telling me that  they were not sure what it was.  They did not think that I had what the first doctor said back in 2000.   My church postor advise me to go to M.D. Anderson, Houston Tx.

M.D. anderson send me for a bioposy and it showed nothing. In other words, no cancer cell, but I was  showing tumors, but they don't know what kind it is.  I have had 3 bioposy and it does not show what it is. They tell me that it is low grade sarcoma. It is some thing that grow very, very slow. M.D.Amderson does not, and will not perform surgery. I was told that it will get worse .

Last month M.D.Anderson told me there was nothing they could do for me. I am showing tumors. The only thing they have done is having a CT every 3 months.  Since 2012. And it is hard for me to believe that there no one can do any thing for me.  I went to a place call "The Start Center"  all they tell me that they want me to take part in a clinical research study , but the treatment will me hard. and I am gong to have ct every 6 weeks, That is to much for my body.  Yesterday I  received a letter from M.D. Anderson asking me to also take part in a study.  So that is where I am right now. Praying for an answer. If they tell me that there is no treatment for me. Than should I take part in any kind of study. That is my question. 

It is a very hard situation, to know that I have tumors growing in my body. What keeps my going is my faith in God. He have plans for me. And only He can heal all of us. I will continue serving Him. He is faithful, and He will heal me one way or another.  I wold like to hear from some one that is facing the same problem I am facing. God bless you.

surgery

did they say they would not do surgery 'at this time' or would not do it at all? How are you doing now?

Mulikk

juliaL said:

I had a tumor removed in April 2006. It was de- differentiated and well differentiated surrounding. They did not get all the well-differentiated surrounding.....Now I just get to wait....I was wondering if you had any updates?
I am also seen in Seattle, at the Cancer Care Alliance, Sarcoma Center. Any Advice?

Hi juliaL

I had the same in 2015, mine was entierly removed, 

how are you feeling now, did it ever came back,?  Hope it never did. 

tfin

My dad has just been diagnosed with the above.  All I am reading says that chemo and radiation really don't impact life longevity and certainly both will just be miserable for him to navigate.  If you were his age, would you all still have done the treatment paths you did?  Thanks for insight....

brb97133

Abdominal liposarcoma

Hi all, I hope that everyone is doing well.

I recently had an abdominal lipscarcoma myself.  Noticed a hard spot in my guts, CT scan revealed large mass.  I had surgery in May 2016 to remove the 37 cm (almost 15 inch) tumor from my right side.  It also cost me a kidney and the rigth side of my colon.  But I was lucky to have a liposarcoma specialist surgeon who was able to achieve large margins so hopefully i will only ever need that one surgrey.  I have since been back for a couple of 6 month checkups and so far the CT scans are clean with no recurrance.

After the surgery, I also underwent 9 weeks of radiation (tomotherapy).

Overall, I am doing good.  If anybody has any questions then I am happy to try to answer.

brb97133

tfin said:

My dad has just been diagnosed with the above.  All I am reading says that chemo and radiation really don't impact life longevity and certainly both will just be miserable for him to navigate.  If you were his age, would you all still have done the treatment paths you did?  Thanks for insight....

I underwent 9 weeks of radiation at 40 year old...

...and, to be honest, it was more difficult than I anticipated.  The radiation (tomotherapy) was focused on my stomach area and especially during the last 4-5 weeks, eating became difficult.  I was often nauseas, vomited frequently just at the smell of some foods (soup was especially difficult).  After a few weeks of struggling to eat, my weight & energy dropped.  I was very fatigued and I realised that it this is what it must feel like to slowly die.  Fortunately, I was near the end so I was able to pull myself out of that downward trajectory once the treatmnent ended but it was not easy for me.

Even after treatment ended, the next couple of weeks were a real challenge to regain weight.  I would sit down to eat and half way through feel too tired to continue.  I really had to force myself to finish some of those meals.  Now, a year later I feel pretty good most of the time but sometimes it does feel as if my energy is down & I am having some kind of relapse.  I would describe myself as 95% recovered from the radiation treatment.

The other significant side effect was skin burning.  Near the end, my skin was almost literally bleeding and I was having nurses treat me with special bandages almost daily. The skin recovered rather quickly those once the daily radiation session ended, maybe a week to 10 days.  A year later the skin has some slight discoloration but nothing too noticeable.

So, the question, if I were 80 years old would I do radiation again?  The short answer is yes, I do think I would attempt it.  But I also think it will be a considerable challenge for an 80 year old and a lot of help from family & friends will likely be needed.  As a fit 40 year old (I do a lot of running), it was not easy and often made me feel as if I was 80 years.  So I can imagine that if I was 80 years old then it might make me feel about 120 years old!  

Regarding chemotherapy, I did not have any of that so I have no insights to share.  

Good luck!

divya451990

brb97133 said:

I underwent 9 weeks of radiation at 40 year old...

...and, to be honest, it was more difficult than I anticipated.  The radiation (tomotherapy) was focused on my stomach area and especially during the last 4-5 weeks, eating became difficult.  I was often nauseas, vomited frequently just at the smell of some foods (soup was especially difficult).  After a few weeks of struggling to eat, my weight & energy dropped.  I was very fatigued and I realised that it this is what it must feel like to slowly die.  Fortunately, I was near the end so I was able to pull myself out of that downward trajectory once the treatmnent ended but it was not easy for me.

Even after treatment ended, the next couple of weeks were a real challenge to regain weight.  I would sit down to eat and half way through feel too tired to continue.  I really had to force myself to finish some of those meals.  Now, a year later I feel pretty good most of the time but sometimes it does feel as if my energy is down & I am having some kind of relapse.  I would describe myself as 95% recovered from the radiation treatment.

The other significant side effect was skin burning.  Near the end, my skin was almost literally bleeding and I was having nurses treat me with special bandages almost daily. The skin recovered rather quickly those once the daily radiation session ended, maybe a week to 10 days.  A year later the skin has some slight discoloration but nothing too noticeable.

So, the question, if I were 80 years old would I do radiation again?  The short answer is yes, I do think I would attempt it.  But I also think it will be a considerable challenge for an 80 year old and a lot of help from family & friends will likely be needed.  As a fit 40 year old (I do a lot of running), it was not easy and often made me feel as if I was 80 years.  So I can imagine that if I was 80 years old then it might make me feel about 120 years old!  

Regarding chemotherapy, I did not have any of that so I have no insights to share.  

Good luck!

HEllo hw r u doin now?
 

HEllo hw r u doin now?

 

mcataguecastro

brb97133 said:

Abdominal liposarcoma

Hi all, I hope that everyone is doing well.

I recently had an abdominal lipscarcoma myself.  Noticed a hard spot in my guts, CT scan revealed large mass.  I had surgery in May 2016 to remove the 37 cm (almost 15 inch) tumor from my right side.  It also cost me a kidney and the rigth side of my colon.  But I was lucky to have a liposarcoma specialist surgeon who was able to achieve large margins so hopefully i will only ever need that one surgrey.  I have since been back for a couple of 6 month checkups and so far the CT scans are clean with no recurrance.

After the surgery, I also underwent 9 weeks of radiation (tomotherapy).

Overall, I am doing good.  If anybody has any questions then I am happy to try to answer.

Hello, I was just recently

Hello, I was just recently diagnosed with a myxoid liposarcoma located on my abdomen. Your scenario looks quiet similar to mine. The only thing is the size difference. My MRI measured the mass at <5cm also located on my right upper abdomen. I just wanted to ask, what was your diagnoses? Did they do a biopsy prior to removal of the mass or after? Where are you now with your treatment? Has there been any recurrence?

kgregory

Mom with 24cm well-diff liposarcoma,

Hello all,

 

My mom has been diagnosed with a 24cm well-differentiated liposarcoma that starts in the retroperitonial area that has grown through the femoral canal into the thigh that is making it hard for her to walk or even sit up straight after short periods of time. She will have radiation therapy for 5 weeks then we wait for a month until surgery. Since the growth is so large I am really scared for the surgery as it is pushing against not only her iliad artery, femoral, deep femoral, lateral femoral circumflex, but also asceding and sigmoid colon and kidney. Though in all of my reading well-differentiated does seem to have a close to 100%  chance of a 5 year survival rate I am scared that how large and close it is to vital motor veins and organs that if there is to be a permanent colostomy, or if she will have to confined to a wheel chair that she will choose to forgo the surgery. Has anyone had any simular surgeries? 

kw4646wk

well-differentiated liposarcoma

Update:

I was diagnosed with welldifferented liposcaroma in 2000 and had my first tumor removed 32lbs in abdoman. 

It was removed and I my first reoccurrence was in 2003 and removed 4lbs.in 2004.

MY next reoccurrence was in 2007 I was encouraged to get pre opt radiation. I got a second opion at MD Anderson in Texas and was told that removal was what they normally advised. I opted for the raditation knowing that removal of one kidney and other parts would be removed to get to the tumor anyway. I my case the raditation caused me to have a ileostomany so i could heal up inside. The take down was 7 months later and it leaked and had to be fixed again 2 weeks later (held good ever since).

The next reoccurrence was 2012 tumor was removed. I had a spinal tap this time and it made my pain level lower.

The next reoccurrence was 2015 and had spread so surgery was not recommended.

I started Ibrance in 2018 and my last 4 scans up to Dec. 2019 showed no progression in growth.

 

I give thanks to all the good health care professionals an University of Utah.