sarcs

katrina
katrina Member Posts: 2
edited March 2014 in Sarcoma #1
Have just had my second surgery for liposarc. 7 years apart. Would like to know also about that
mailing list. Feel so alone. Not many people can relate to this wonderful, rare world of
liposarcomas. Am I the only one?

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • katrina
    katrina Member Posts: 2
    #3
    unknown said:

    This comment has been removed by the Moderator

    Hi. I don't know what the varian liner accelerator (was that it?) is. Please explain. My tumors
    have been rather large, so radiation is ruled out. First time out did four cycles of MAID chemo.
    They have recommended no chemo this time. So I just cross my fingers? Wish I could have a
    more active role than just crossing my fingers and waiting for lightening to strike. Three sweet
    (when not fighting) chidlen to keep alive for, plus a patient husband. Faith takes on a whole
    new meaning, doesn't it. Thanks. Also found the ACOR site, but not real user friendly and
    my computer skills are prohibiting me from accessing it. It looks very informational.
  • Unknown
    Unknown
    #4
    katrina said:

    Hi. I don't know what the varian liner accelerator (was that it?) is. Please explain. My tumors
    have been rather large, so radiation is ruled out. First time out did four cycles of MAID chemo.
    They have recommended no chemo this time. So I just cross my fingers? Wish I could have a
    more active role than just crossing my fingers and waiting for lightening to strike. Three sweet
    (when not fighting) chidlen to keep alive for, plus a patient husband. Faith takes on a whole
    new meaning, doesn't it. Thanks. Also found the ACOR site, but not real user friendly and
    my computer skills are prohibiting me from accessing it. It looks very informational.

    This comment has been removed by the Moderator
  • pamela55
    pamela55 Member Posts: 7
    #5
    no, you're not... pamela55
    07-26-2004
    03:28 PM EDT Re: liposarcoma [reply]
    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....

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