retroperitoneal area liposarcoma

rustyp
rustyp Member Posts: 2
edited March 2014 in Sarcoma #1
Good day all.. I had my first experience with a well-differentiated liposarcoma in my retroperitoneal area in September 2006. This bugger took the better part of 8 hours to remove . My doctor was a uroligest who performed a fantasyic job removing the toumor wirh out damaging the package or any internal organs. My recovery was a long hard road mostly due to the extent of the surgery in the abdominal area.
I was diognosed with a second toumor four months later in the same area. Although this toumor may have been part of the first the fact remained that it needed to be removed. My second surgery was performed in NYC at MSKCC exactly one year after my first. The surgery was 10 hours with great success. My recovery was much faster largley due to the surgical skills and my attitude that I did not want to be there any longer than I had to.
Both surgerys were abdominal entry. The first toumor was removed from my prostrate, uretha, bladder and a few other bits here and there. The second toumor was removed from my uretha, bladder again and very close to my rectom wall.
Now 18 months later I am diagnosed with yet another bugger in me. This toumor is located along my rectom wall and can be felt with a physical exame. The operation will be from the back end this time. The surgery will remove the coccy bone and with great hope have access to the toumor with out abdominal entry. With fingers crossed the removal of the toumor will be unremarkable and no other resections or complicated surgery will be needed.
The liposarcoma I am dealing with is one that can grow at will and seem to be resident in my Retroperitoneal area. Chemotheropy or radiation have yet to be recommended by MSKCC. My first surgen recommended radiation but not without possiable complications to my intestines, bladder and bows. I had a second opinion in NJ at HUMC and radiation was recommended but not a guarantee that it would have any affect with this cancer.
So it seems at this time that repeated surgery is the only option. I am focusing my positive mental attitude in a direction that will keep my mind and body healthy and fit.
I can not tell you how disappointed I feel because I feel to lucky to be disappointed if that makes any sence. I as others are delt a hand of cards and we have to play the game with what we have. From what I have researched my sarcoma will came back and I will need another surgery and I will face it with the realisation that life has its moments.
It any one has any information to share about this cancer I would be more than greatful to you for it.

Comments

  • bmscan
    bmscan Member Posts: 37
    #2
    Good Luck with the Surgery
    I have gone through ten years and seven tumors. Please read my paper in my Expressions (...can get to through clicking on my username on the left). It should be a little inforamtive and uplifting. ...Frequent scans and cyberknife radiation seems to help.
  • howell58
    howell58 Member Posts: 13 Member
    #3
    liposarcoma
    Browsing for information on liposarcomas and found your story.
    My husband was diagnosed in August of 2007 with what they thought was renal cell cancer or kidney cancer. Urologist took out one kidney, however biopsy results determined it to be a sarcoma. We were sent to Memorial Sloan Kettering. At my husband's initial CT scans, it appeared a piece of tumor is still left, and a small spot on the lung noted but felt it was scar tissue. This past Sept., 2008, the Ct showed growth to the spot on his lung. He went in for surgery within 2 weeks and that too was determined to be a liposarcoma. His last CT scans in March showed no changes or movement from what is still left in his back area.
    I feel that I really do not understand alot of what the doctor tells us about this cancer. He keeps telling us that he is just watching it and when it grows my husband will need surgery again. I can kind of accept that, but what concerns me is can it be going any place else in the meantime? I'm hoping you have some info to offer based on your experience. I of course, will keep you and your family in my prayers. Thanks for listening.
    Sue
  • sa00450
    sa00450 Member Posts: 1
    #4
    howell58 said:

    liposarcoma
    Browsing for information on liposarcomas and found your story.
    My husband was diagnosed in August of 2007 with what they thought was renal cell cancer or kidney cancer. Urologist took out one kidney, however biopsy results determined it to be a sarcoma. We were sent to Memorial Sloan Kettering. At my husband's initial CT scans, it appeared a piece of tumor is still left, and a small spot on the lung noted but felt it was scar tissue. This past Sept., 2008, the Ct showed growth to the spot on his lung. He went in for surgery within 2 weeks and that too was determined to be a liposarcoma. His last CT scans in March showed no changes or movement from what is still left in his back area.
    I feel that I really do not understand alot of what the doctor tells us about this cancer. He keeps telling us that he is just watching it and when it grows my husband will need surgery again. I can kind of accept that, but what concerns me is can it be going any place else in the meantime? I'm hoping you have some info to offer based on your experience. I of course, will keep you and your family in my prayers. Thanks for listening.
    Sue

    same thing happened to my mom
    My mom underwent surgery performed by a urologist that believed she had a malignant tumor of the kidney. Her left kidney and huge mass was removed and pathology reported that she has myxoid liposarcoma. I'm not sure if the surgery resulted in a margin negative resection but she has now been referred to a Radiation Oncologist. I wished she had been referred to a urologist/oncologist from the get go. Now I worry that the surgery was not performed appropriately and wonder if her kidney could have been spared... I am losing my mind.
  • kaewing2003
    kaewing2003 Member Posts: 2
    #5
    Hello
    I have recently been found to have a 16cm x 12cm mass in my right hemipelvis. No one seems to know what it is, but, they are now thinking sarcoma. So I go to doctor number 4 on 06/15 at Vanderbilt. So far, I have seen a general surgeon in 2006 when it was only 4x3x7cm, a GYN oncologist, a urologic oncologist, and a now a oncology surgeon. I have had two laparoscopies and still no biopsy...no one wants to venture out of their field of expertise! I just wonder if anyone else had this much trouble getting a diagnosis? I am so sorry to hear of the terrible time you have had with this cancer, you are in my prayers and hopefully this will be the last surgery for you for a good long while. I wish I had some words of wisdom for you, but, I am just as baffled as anyone. Please keep us posted.
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • BigDumbDawg
    BigDumbDawg Member Posts: 1
    #7
    Hey there --

    In April of '03, I had surgery to remove a liposarcoma tumor; it weighed 22 lbs and measured 32cm. Followed up with chemo -- epirubicin and ifosfomide, with mesna (to help keep my bladder intact from the harsh effects of the chemo meds). Chemo lasts approximately 7 months, and was followed up with radiation, which lasted about 5 weeks. Here I am, six years later. My oncologist was Katherine Grant in San Francisco CA; she's affiliated with CPMC, Pacific Campus. I'm now 48 years old, male, white. Got a really cool scar, hehehe.

    That's the information I can share. Good luck.

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