Endometrial Stromal Sarcoma

racingfan2002
racingfan2002 Member Posts: 3
edited March 2014 in Sarcoma #1
My entire families life has changed very rapidly lately. My grandmother developed flu like symptoms in Jan. we finally got her to agree to go to the Dr in mid Feb. We were rushed to the emergency room to what seems is now a roller coaster ride (A VERY BAD ONE). They ran tests and the next day came in and said that she had a tumor and a large one, it seemed to be contained in the uterine cavity, but the CT scan revealed spots on her lungs as well. She underwent a radical hysterectomy two days later. The tumor was larger than a 8 lbs baby. They also removed her appendix and gallbladder. They did the pathology and came back and told us that it is high grade endometrial stromal sarcoma. She had the hysterectomy one month ago tommorrow. We are getting the Dr.'s at Moffitt Cancer Center to take a look at the case but the original oncologist pretty much said there was nothing they could do that this type of sarcoma does not respond to chemo or radiation therapies. I am just praying that someone out there can read this and give us some hope right now. We have never been told a stage but we do know that it has metastisized because in the pathology report it said that it is intensely attacking the angiolyphatic system. They are calling it Undifferentiated High Grade Endometrial Stromal Sarcoma. Maybe they should rename it the Devil.. Please help if you can!

Comments

  • motherofsons
    motherofsons Member Posts: 1
    #2
    Hello,

    My mother has just been diagnosed also with a type of endometrial cancer that onyly 3-5% of women get. It is called papillary serous adencocarcinoma. It also does not respond well to chemo or radiation but they are going to go ahead and treat her with both, hoping there might be a chance. How is your mother?
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #3
    I had undifferentiated soft tissue sarcoma. It was high grade and I was told it wouldn't respond well to chemo or radiation. It responded well to both and I have been in remission for 13 months. I notice treatments are being done at Moffett in Tampa. If they can't help, I strongly advise trying Shands Hospital at University of Florida in Gainesville.
  • racingfan2002
    racingfan2002 Member Posts: 3
    #4
    AuthorUnknown said:

    I had undifferentiated soft tissue sarcoma. It was high grade and I was told it wouldn't respond well to chemo or radiation. It responded well to both and I have been in remission for 13 months. I notice treatments are being done at Moffett in Tampa. If they can't help, I strongly advise trying Shands Hospital at University of Florida in Gainesville.

    I appreciate that you took the time to tell me that. You are the first hope that we have had, everyone that I have talked to has said that Sarcoma is the worst of the worst and that chances are she is terminal. Thanks alot for the information and Hope..
  • racingfan2002
    racingfan2002 Member Posts: 3
    #5
    motherofsons said:

    Hello,

    My mother has just been diagnosed also with a type of endometrial cancer that onyly 3-5% of women get. It is called papillary serous adencocarcinoma. It also does not respond well to chemo or radiation but they are going to go ahead and treat her with both, hoping there might be a chance. How is your mother?

    I am so sorry to hear that you are in a similar situation as we are. I have found alot of helpful information at my local library. There are alot of books available on rare types of cancers. I am sure you are asking yourself the same question we were told less than 1% of the people with cancer have ESS. You wonder with these rare types why they picked those you love? Best of Luck.
  • cassilly
    cassilly Member Posts: 9
    #6
    Hi, I don't know what your Grandmother's condition is now, but I was diagnosed 14 years ago with a high grade sarcoma. There are now numerous centers around the country...MD Anderson, Johns Hopkins, Sloan-Kettering, etc. The National Cancer Institute has more information. Unfortunately, it is true, that sarcomas, since they are rare, have not had the level of research as other cancers. Best wishes. Hope this helps.

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