liposarcoma

vickin
vickin Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
I am interested in hearing from someone who has been diagnosed with liposarcoma in the past 5 years.

Comments

  • richyang
    richyang Member Posts: 2
    #2
    my Mom. had tumor in her stomach
    she was hospitalized by removing one tumor on the skin but remaining tumor start to spread to all over, she feel she can't eat,
    she can't breath,her stomach swall with giganic tumor contain, now her feet swell as well, she can't walk, I am afraid of what is the next, she is in homecare right now
    please tell me any kind of drug can release her pain. she is 80 years old, occationally took medicine for heart,
    now she is slim to bone, can't take any radical or chemical treatment.
    please fax to me before sat. 4/15/01
    at fax #011886-426220419
    Richard Yang
  • rogue
    rogue Member Posts: 2
    #3
    Vickin,

    I was diagnosed with liposarcoma a little over 5 years ago. I had intensive radiation before any of the operations then had brachytherapy after. My email is rogue@beaverbelievers.com. If you want, write me. I am always willing to talk to someone that will understand.

    -Ryan
  • heather51601
    heather51601 Member Posts: 1
    #4
    my mother was diagnosed with liposarcoma of the breast, they did surgery and removed her left brest about 1 month after dx. She went through all the bone scans, cat scans, pet scans and blood tests, no sign of cancer is evident, they are rec. chemo since this type of cancer travels in the blood stream and can be microscopic. The most frustrating thing is that it is so rare, they just dont know alot about it. What is your story?
  • Unknown
    Unknown
    #5
    heather51601 said:

    my mother was diagnosed with liposarcoma of the breast, they did surgery and removed her left brest about 1 month after dx. She went through all the bone scans, cat scans, pet scans and blood tests, no sign of cancer is evident, they are rec. chemo since this type of cancer travels in the blood stream and can be microscopic. The most frustrating thing is that it is so rare, they just dont know alot about it. What is your story?

    This comment has been removed by the Moderator
  • Tabitha
    Tabitha Member Posts: 1
    #6
    heather51601 said:

    my mother was diagnosed with liposarcoma of the breast, they did surgery and removed her left brest about 1 month after dx. She went through all the bone scans, cat scans, pet scans and blood tests, no sign of cancer is evident, they are rec. chemo since this type of cancer travels in the blood stream and can be microscopic. The most frustrating thing is that it is so rare, they just dont know alot about it. What is your story?

    I have liposarcoma in the retroparineal area. I understand the fustration of it being so rare. I feel I hit all the rarest of the rare parts of the cancer. I am 34, had my first tumor removed in May of 2001 and now it is back in the same area. I just went for a biopsy and am waiting the results. I couldn't do radiation because of location or chemo because it is low grade(1st time). I feel your fustration.
  • dyana
    dyana Member Posts: 15
    #7
    Tabitha said:

    I have liposarcoma in the retroparineal area. I understand the fustration of it being so rare. I feel I hit all the rarest of the rare parts of the cancer. I am 34, had my first tumor removed in May of 2001 and now it is back in the same area. I just went for a biopsy and am waiting the results. I couldn't do radiation because of location or chemo because it is low grade(1st time). I feel your fustration.

    my daughter 24 had a 6" lipo removed from her thigh along with the entire femoris muscle in sept.2003. 8 weeks rads and now pt. i too can not believe it is so rare. it took me months to find alot of info on it, and also find anyone else with it. we had to go out of state for the surgery bc it is so specialized. good luck in your recovery. dyana
  • pamela55
    pamela55 Member Posts: 7
    #8
    Tabitha said:

    I have liposarcoma in the retroparineal area. I understand the fustration of it being so rare. I feel I hit all the rarest of the rare parts of the cancer. I am 34, had my first tumor removed in May of 2001 and now it is back in the same area. I just went for a biopsy and am waiting the results. I couldn't do radiation because of location or chemo because it is low grade(1st time). I feel your fustration.

    I was diagnosed with retroperitoneal liposarcoma in April. Only sympton (only..ha!) was swollen legs, distended belly, I looked like I was 9 months pregnant. The local quackers put me through every test they 'felt' were necessary, all the expensive ones that is, this went on for some 5 yrs.+. Finally, this April, 2004, my daughter took me to the ER, the only reason I'm alive is that the doctor on call, was NOT on staff. He found a 'large mass' in my abdomen...too big for the locals to handle and sent me (I left in a gown to tell you how fast it went) to Mayo Clinic in Rochester, MN. They had a team of great guys in went through all the options/CT's, etc. On April 14, they told me it was a large tumor, which was remove don April 15th. Turned out it was a 20lbs tumor...how do ya miss that? I had my right kidney, right ovary and fallopian tube removed, mind you they were fine, just entangled in tumor, it's the spindle cell variety. So I lost 3 good organs, a long hospital stay, by today's standards (2 weeks). I went home, one week later, the same pain that originally took me to the ER, was back. Turns out the tumore was so large it ruptured 'stuff' and I had 'man-sized' hernias...all in a row. Back to Rochester, more surgery. I was off work for 3 months, went back (too soon I fear) and will have my first CT next month, 65% reoccurance, 50% survival rate...I have good days, and some bad. If I feel well, I naturally over do it, pay for it the next day...Chemo is out because there aren't too many organs left, as I have 1 lung, 1 kidney, etc. When it comes back, it's going to be radiation...they left two titanium clips at the site of origin...oh and hey, they had to severe nerves in groin most affected and entangled, leaving me with a boatload of numb where there should be happy thoughts and feelings. I'm so frustrated, my poor husband is 'liposarcomed-out'...I sometimes feel like it's the only thing I think/talk about. Most often, I'm positive, but then I realize I almost died (was within 2 weeks of dying in fact)...all because the locals couldn't find a 20lbs tumor...how is that possible? On the upside, which there aren't too many of...I did loose 55lbs and counting...hellish expensive diet....
  • kellyradeke
    kellyradeke Member Posts: 5
    #9
    I was diagnosed w/ a pleomorphic liposarcoma last month. Please check out my web page for more info and then email me. I would love to chat w/ you
    Kelly
  • Unknown
    Unknown
    #10
    This comment has been removed by the Moderator
  • Mischelle
    Mischelle Member Posts: 4
    #11
    Liposarcoma
    My partner was just diagnosed for the 3rd time with Liposarcoma, she is tough as nails but I wonder how much more she can go through. Where is yours located? Her 1st was in her thigh, 2nd in her tailbone and this time in her pelvic bone. Chemo starts again in 2 weeks. She had been off chemo for 2 months after a year and a half of intensive treatments.
  • tandrews1
    tandrews1 Member Posts: 2
    #12
    kellyradeke said:

    I was diagnosed w/ a pleomorphic liposarcoma last month. Please check out my web page for more info and then email me. I would love to chat w/ you
    Kelly

    Pleomorphic liposarcoma
    i am a 35 year old female. I was diagnosed with this about a week ago. I can't find much info on it. Could someone please help me? Thanks Teri
  • Kelvin_K
    Kelvin_K Member Posts: 6
    #13
    Late Reply??
    Hi, I was diagnosed with Pleomorphic Liposarcoma in my right knee in 1999 (within your requested 5-year window). However, it is now 2011 so not sure if you are still looking for information but will be glad to share any information that I have.
  • karmabuddha
    karmabuddha Member Posts: 5
    #14
    Tabitha said:

    I have liposarcoma in the retroparineal area. I understand the fustration of it being so rare. I feel I hit all the rarest of the rare parts of the cancer. I am 34, had my first tumor removed in May of 2001 and now it is back in the same area. I just went for a biopsy and am waiting the results. I couldn't do radiation because of location or chemo because it is low grade(1st time). I feel your fustration.

    hi
    how are you doing now? they told me I have the same it's 19.5cmx8.5cm I get surgery in oct. they are taking my kidney, spleen,uterus & tumor out.
  • karmabuddha
    karmabuddha Member Posts: 5
    #15
    Tabitha said:

    I have liposarcoma in the retroparineal area. I understand the fustration of it being so rare. I feel I hit all the rarest of the rare parts of the cancer. I am 34, had my first tumor removed in May of 2001 and now it is back in the same area. I just went for a biopsy and am waiting the results. I couldn't do radiation because of location or chemo because it is low grade(1st time). I feel your fustration.

    hi
    are you doing ok now? I have it going for surgery oct
  • leapinliz77
    leapinliz77 Member Posts: 6
    #16
    karmabuddha said:

    hi
    how are you doing now? they told me I have the same it's 19.5cmx8.5cm I get surgery in oct. they are taking my kidney, spleen,uterus & tumor out.

    Liposarcoma of the abdomen
    Hi

    Just a quick note to tell you that I too have had a liposarcoma of the right lower quadrant of my abdomen. My sarcoma was attached to the rectus muscle in my abdomen, rougly 10 cm in size. I had it removed along with a small portion of small bowel and a large section of the rectus muscle. They had to put in a graft to replace the muscle that they removed. Underwent 37 radiation treatments. This was 10 months ago and I was doing fine until two weeks ago when I developed a pain in the left lower quadrant of my abdomen. Ended up in the ER thinking I had a small bowel obstruction. Unfortunately, what I had was a recurrence of the liposarcoma, only in a new location. I am two weeks status post removal of the new liposarcoma along with another small portion of small bowel and feeling a bit distressed about it but I have no choice but to keep up the fight. I guess it means more CT scans more often to keep on top of all of this. I wish you well in your fight with this terrible disease. If I can be of any help to you don't hesitate to contact me through this website.

    Liz
  • tiamarie52
    tiamarie52 Member Posts: 1
    #17
    sarcoma
    Vicki

    Hi my husband was diagnosed w/liposarcoma back in May ,he has been thru chemo and radiation, we go Nov 8th for CT scan and then 11th to surgeon, he needs margins. He has turned our world upside down. This has just been horrible. I did find a wesite for sarcomas I think its listserv.acor.org. What kind do you have? Apparently there is subtypes too, I still do not understand it all. Chris

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