Liposarcoma in abdominal area

Jac
Jac Member Posts: 1
edited March 2014 in Sarcoma #1
I would love to chat with someone who grows cancerous fatty tumors that appear around the colon, small intestine and abdominal area. I've had 3 surgeries in 4 years with prognosis that more surgeries will come. No treatment will help only removal whenever they show up large enough. I haven't found anyone out there who has this rare type of cancer.
«1

Comments

  • dyana
    dyana Member Posts: 15
    #2
    hi jac. my daughter had a liposarcoma removed from her thigh and i know that is not the same.
    this site is great, hope you find someone. i know the acorsite at http://listserv.acor.org has alot of people with retro liposarcoma. the web masters is rose and she has had several surgeries for them and still has tumors. hope this helps you. hang in there. dyana
  • kellyradeke
    kellyradeke Member Posts: 5
    #3
    I had a pleomorphic liposarcoma removed from my abdomin muscle last june....I have not (knock on wood) had any new tumors show up as of yet. I just had a re-excision in nov and there was no sign of any "new" tumor growth. I am on a very harsh chemo regiment as well as 5-6 weeks of radiation after that. I would be glad to keep in contact with you...they have explained to me that this type of fatty tumor can just appear whenever, even after months of "clear" scans. I am a Stage 3 Grade 3.
    please keep in touch
    kelly
  • Geneo
    Geneo Member Posts: 1
    #4
    Jac, My father has myxoid liposarcoma in the abdominal area. Im not the most educated on this but I am resolved to learn as much as I can. What I can tell you about his condition is that the first tumor appeared 12 years ago and he has had them show back up every 3 years or so. Each time he has had surgery to remove them. Right now, he has one the size of a grapefruit above his intestines ; he is seeing a specialist in a few days. The way he has explained them to me... they have basically just taken up space that the other organs need. The tumors themselves aren't near as painful the surgerys are. My father has told me that his a very rare type of cancer... which sounds very much like yours Jac. The doctors have described as a mass... similar to chicken fat... not hard at all. I don't think that there is a way to stop them from coming back, but I'd like find out if there is a less intrusive way of removing them. Like, why can't they suction them out... kind of like liposuction. I realize that I am ignorant about this cancer, but until them I'm going to ask these stupid questions.
  • kellyradeke
    kellyradeke Member Posts: 5
    #5
    I just thought I would update again, Since my last reply to you I have had another tumor removed and surgery in June of 2005 and I am now on my way to Seattle for yet another growth in my abdomin right about in the same area, as well as they have found a nodule in my upper left lung. Soooo yes this is a monster of a cancer and the only thing they are telling me now that because I have had 3 surgeries I am out of room on my abdomin and need to have a reconstruction surgery....BUT im still here and fighting and also seeking answers. Good luck to you...stay strong...Kelly
  • juliaL
    juliaL Member Posts: 1
    #6
    kellyradeke said:

    I just thought I would update again, Since my last reply to you I have had another tumor removed and surgery in June of 2005 and I am now on my way to Seattle for yet another growth in my abdomin right about in the same area, as well as they have found a nodule in my upper left lung. Soooo yes this is a monster of a cancer and the only thing they are telling me now that because I have had 3 surgeries I am out of room on my abdomin and need to have a reconstruction surgery....BUT im still here and fighting and also seeking answers. Good luck to you...stay strong...Kelly

    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?
  • ToniaLee
    ToniaLee Member Posts: 1
    #7
    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 Julia, my name is Toni M. I was diagnoised with Liposarcoma in the abdominal area in Jan 2003. The tumor, which was around 3.5 lbs, was attached to my left kidney, colon, pancreas, liver, and small intestine, it was removed in March, it was capsulated. I din't need any chemo or radiation at that time. Now, after 2 1/2 yrs another tumor has reocurred in that same area. I'm currently going through extensive radiation treatments at the Un. of Maryland Hospital in Baltimore, MD. My husband & I live in Frederick. After 6 weeks of radiation, I'll be scheduled for the 2nd surgery the end of January where they will proceed to remover the said sarcoma, plus my left kidney. It's my first time on this website, and I'm amazed to read all the stories related to this rare form of cancer. It's good to know that there is such a support group to call upon.
  • lkern
    lkern Member Posts: 4
    #8
    I was diagnosed with a retroperitoneal sarcoma in Dec 04, had it removed by a general surgeon in Jan o5. In March of this year it was back, so I went to a surgical oncologist who removed it, placed a bag on my left side to push organs to the righ, and then had 34 radiation treatments. He tacked my left kidney up so the ratiation would kill the bottom half of my kidney since my tumor was between the kidney and back muscle wall on my left side. His opinion was that my second tumor was not a re-occurance but a continuation of the same problem since the cancer cells were in my left kidney and it was not removed or treated after the first surgery. My last PET Scan this month shows something in my left pelvic region (below the original tumor and below the radiated area) but we are giving it three month before another MRI and PET Scan to determine what it is. From reading the replys to your post, I'm starting to feel like this will be the 'neverending' routine. I've been on the internet today searching for nutritional help for eleminating cancer cells in the body and will be making a trip to my health-food store tomorrow.

    One question to you and all who read this post. I was told that I am loaded with 'brown fat'. This is a fat that you are born with and keeps babies warm...but most people usually outgrow it. Does anyone else have this 'brown fat' problem?
    Please let me know how you are doing and I will repost in March after my next round of test.
  • armayn
    armayn Member Posts: 14
    #9
    lkern said:

    I was diagnosed with a retroperitoneal sarcoma in Dec 04, had it removed by a general surgeon in Jan o5. In March of this year it was back, so I went to a surgical oncologist who removed it, placed a bag on my left side to push organs to the righ, and then had 34 radiation treatments. He tacked my left kidney up so the ratiation would kill the bottom half of my kidney since my tumor was between the kidney and back muscle wall on my left side. His opinion was that my second tumor was not a re-occurance but a continuation of the same problem since the cancer cells were in my left kidney and it was not removed or treated after the first surgery. My last PET Scan this month shows something in my left pelvic region (below the original tumor and below the radiated area) but we are giving it three month before another MRI and PET Scan to determine what it is. From reading the replys to your post, I'm starting to feel like this will be the 'neverending' routine. I've been on the internet today searching for nutritional help for eleminating cancer cells in the body and will be making a trip to my health-food store tomorrow.

    One question to you and all who read this post. I was told that I am loaded with 'brown fat'. This is a fat that you are born with and keeps babies warm...but most people usually outgrow it. Does anyone else have this 'brown fat' problem?
    Please let me know how you are doing and I will repost in March after my next round of test.

    I was diagnosed in Septermber 2002 with my first, a whopping 8 pound/football sized tumor. 2nd surgery was in july 2005, 3rd in april 2006 and looking forward to a 4th in june or july of this year(waiting to heal from a hernia surgery I had last week before they will take that tumor- at which time they will take my right kidney).

    The surgion did not say anything about 'brown fat' nor have I been able to find that reference in my surgical pathology reports, althought there is reference to pale yellow-pink fatty tissue.
    I too am interested in 'alternative medicine', healthy eating. What did you find out and how is it going for you?
  • marly42
    marly42 Member Posts: 2
    #10
    Abdominal Liposarcoma
    Jac, I have this rare type of cancer and it is a strange one indeed. I was diagnosed 19 years ago and after 4 surgeries I was recently diagnosed as having 4 more tumors in the abdominal area. I have been told that there is now a clincal trial that I may possibly participate in that has shown positive results in the treatment of the lipsarcoma. Have you heard of this?
  • marly42
    marly42 Member Posts: 2
    #11
    armayn said:

    I was diagnosed in Septermber 2002 with my first, a whopping 8 pound/football sized tumor. 2nd surgery was in july 2005, 3rd in april 2006 and looking forward to a 4th in june or july of this year(waiting to heal from a hernia surgery I had last week before they will take that tumor- at which time they will take my right kidney).

    The surgion did not say anything about 'brown fat' nor have I been able to find that reference in my surgical pathology reports, althought there is reference to pale yellow-pink fatty tissue.
    I too am interested in 'alternative medicine', healthy eating. What did you find out and how is it going for you?

    Abdominal Liposarcoma
    I have liposarcoma in the abdominal areas as well and after 4 surgeries in 19 years I now have 4 tumors in the same area. I am looking at a clinical trial that has shown positive results for this type of cancer.
    I am also looking into alternative medicine? Is this something you have done?
  • kimguy
    kimguy Member Posts: 1
    #12
    marly42 said:

    Abdominal Liposarcoma
    I have liposarcoma in the abdominal areas as well and after 4 surgeries in 19 years I now have 4 tumors in the same area. I am looking at a clinical trial that has shown positive results for this type of cancer.
    I am also looking into alternative medicine? Is this something you have done?

    I had surgery 4.5 yrs ago. Now it has come back. It is a grade 1,well-diferentiated.Only surgery is recommended but not yet. Have you any ideas about alternative treatment?
  • katsy
    katsy Member Posts: 1
    #13
    marly42 said:

    Abdominal Liposarcoma
    Jac, I have this rare type of cancer and it is a strange one indeed. I was diagnosed 19 years ago and after 4 surgeries I was recently diagnosed as having 4 more tumors in the abdominal area. I have been told that there is now a clincal trial that I may possibly participate in that has shown positive results in the treatment of the lipsarcoma. Have you heard of this?

    Abdominal & Lung Liposarcoma
    My Mom had her first tumor removed about 12 years ago along with her right kidney. Then about 3 years ago she was treated for a small tumor on her liver by "pickling" it with some type of acetic acid. Now in the last three months tumors seem to be coming back faster and growing faster. She has had two major surgeries in the last three months, one to remove a tumor on her lung and another to remove one from her abdominal area that blocked her intestinal tract. Now within a three week time period she has another on her lung and two in the abdomimal area one on the aorta.

    Now they say no treatment and she may only survive another 3-9 months. If there is a clinical trial I sure would like to know about it.
  • jenmessley
    jenmessley Member Posts: 8
    #14
    katsy said:

    Abdominal & Lung Liposarcoma
    My Mom had her first tumor removed about 12 years ago along with her right kidney. Then about 3 years ago she was treated for a small tumor on her liver by "pickling" it with some type of acetic acid. Now in the last three months tumors seem to be coming back faster and growing faster. She has had two major surgeries in the last three months, one to remove a tumor on her lung and another to remove one from her abdominal area that blocked her intestinal tract. Now within a three week time period she has another on her lung and two in the abdomimal area one on the aorta.

    Now they say no treatment and she may only survive another 3-9 months. If there is a clinical trial I sure would like to know about it.

    Clinical trials
    Google Sarcoma clinical trials. they are being done all over the country. also look up sarcoma centers
  • jillgreg
    jillgreg Member Posts: 3
    #15
    my boyfriend and liposarcoma
    Have you had radiation Jac or chemo or both?
  • jillgreg
    jillgreg Member Posts: 3
    #16
    marly42 said:

    Abdominal Liposarcoma
    I have liposarcoma in the abdominal areas as well and after 4 surgeries in 19 years I now have 4 tumors in the same area. I am looking at a clinical trial that has shown positive results for this type of cancer.
    I am also looking into alternative medicine? Is this something you have done?

    liposarcoma
    Marly42

    Could I ask what state you found clinical trials for lipsarcoma? I have researched this and was unable to locate any.

    Thank you.
  • jillgreg
    jillgreg Member Posts: 3
    #17
    marly42 said:

    Abdominal Liposarcoma
    I have liposarcoma in the abdominal areas as well and after 4 surgeries in 19 years I now have 4 tumors in the same area. I am looking at a clinical trial that has shown positive results for this type of cancer.
    I am also looking into alternative medicine? Is this something you have done?

    liposarcoma
    Marly42

    Could I ask what state you found clinical trials for lipsarcoma? I have researched this and was unable to locate any.

    Thank you.
  • readytolive
    readytolive Member Posts: 1
    #18
    jillgreg said:

    my boyfriend and liposarcoma
    Have you had radiation Jac or chemo or both?

    High-Grade Malignant Neoplasm/Unspecified - Treating as Sarcoma
    I had a 12.5 x 9.0 x 6.0 cm tumor removed from my abdominal wall 4/1/11 - April Fool's! They've identified it as a high-grade malignant neoplasm but have not been able to specify the specific type of cancer. They describe it as very aggressive and dangerous. The surgeon who did the first surgery was a general surgeon. Then I was referred to the Stanford Cancer Center by my local oncologist. They are treating it as sarcoma-like. I had a resection surgery at Stanford 7/8/11 as their protocol for this type of cancer is to remove larger margins than the general surgeon did. Luckily there were no cancer cells in the margins removed. I thought I was done and would need on-going scans to see if it came back or tumors developed in other places. But, the team at Stanford was concerned that because of the aggressiveness of the cancer cells in the tumor there is a risk of microscopic cancer cells in my body that we have no way of identifying at this time. So, they recommended chemotherapy. I had my third of twelve treatments today; Gemzar and Taxotere. My plan is to do everything I can to stay healthy through this process. It's already hard. I started a leave from work so hope more rest, exercise, less stress, more time to buy and fix healthy food, and spiritual work will help. I am a single mother with a 16-year-old son and plan to do everything I can to be around a LONG TIME! I wish for peace, love, and light for all dealing with cancer.
  • nanapat6225
    nanapat6225 Member Posts: 3
    #19
    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.

  • ConnieE
    ConnieE Member Posts: 2
    #20
    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?

    How are you doing?

    My fiance is rowing that same boat

  • ConnieE
    ConnieE Member Posts: 2
    #21
    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.

    Pleomorphic Liposarcoma

    My Fiance has Pleomorphic Liposarcoma being treated at UCLA, Heard of a doctor at Stanford who has clinicals coming up for a treatment.  We are looking for other opinions at local S. California facilities.  Thought this was interesting

    http://med.stanford.edu/news/all-news/2012/03/single-antibody-shrinks-variety-of-human-tumors-transplanted-into-mice-study-shows.html

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3319521/

Discussion Boards