Rare ovarian sarcoma... Am I alone on this

heathercurry
heathercurry Member Posts: 7
edited March 2014 in Sarcoma #1
I was diganosed with a type of ovarian sarcoma May 31 of 2008. My doctors have all told me that this is very rare.. I have actually heard that so many times, the word rare has become a trigger to me. I was told my my previous doctors that they honestly did not knwo how to treat this or what the appropriate next step was because there have only been like 5 cases in the world and most of the women were in ther 60's. As a 23 year old woman it is hard for me to believe that no one else had had this or knows what to do next. Has anyone else heard of this before or had an experience with this type of cancer before?? I am reaching out... My previous doctors told me there was really no data on this cancer and that they were using goggle and the internet to find resources... Any advice or knowledge would be so appreciated.

Comments

  • rrqueen
    rrqueen Member Posts: 1
    #2
    ovarian sarcoma
    Hi,

    I was diagnosed with endometrial sarcoma during a simple vaginal hysterectomy. I called M.D. Anderson canser (always misspell so it gets no respect) center in Houston Tx. They treated me for stage 3 stage 4 sarcoma and I've been canser free for a year and 6 mos.
    Best wishes in journey to recovery,

    M.
  • dd
    dd Member Posts: 3
    #3
    rrqueen said:

    ovarian sarcoma
    Hi,

    I was diagnosed with endometrial sarcoma during a simple vaginal hysterectomy. I called M.D. Anderson canser (always misspell so it gets no respect) center in Houston Tx. They treated me for stage 3 stage 4 sarcoma and I've been canser free for a year and 6 mos.
    Best wishes in journey to recovery,

    M.

    Dear rrqueen
    What kind of treatment was given to you? I have something similiar to what you had, so glad you are doing well....hope to hear from you
    dd
  • Amysmel
    Amysmel Member Posts: 1
    #4
    Ovarian Sarcoma
    Hi heathercurry. I just came across your e-mail. Are you still wondering about Ovarian Sarcoma? My mom had it and I might be able to offer some insights. Please let me know if you still need information.
  • me888
    me888 Member Posts: 1
    #5
    24 year old diagnosed with rare ovarian sarcoma
    Hi, my cousin is 24 and was diagnosed with rare ovarian sarcoma, angiosacroma?.
    I am really trying to find more info on this extremely rare cancer. Are you still looking for more information on this cancer? Anyone else who knows of any treatments, or who went through this? Thank you for all your help!
  • hope4her
    hope4her Member Posts: 1
    #6
    Amysmel said:

    Ovarian Sarcoma
    Hi heathercurry. I just came across your e-mail. Are you still wondering about Ovarian Sarcoma? My mom had it and I might be able to offer some insights. Please let me know if you still need information.

    Endometrial Stromal Sarcoma Ovarian Cancer stage IV
    I ran across your post and I am reaching out for help. I'm new to the cancer board my BFF has been recently diagnosed. The tumor was the size of a football attached the colon. They removed part of her colon and she has a temporary ostomy bag. They did a complete hystorectomy........15 day hospital stay now at home and starting chemotherapy on Friday. Any guidance, websites would be greatly appreciated.
  • Marisa Castelo
    Marisa Castelo Member Posts: 3
    #7
    hope4her said:

    Endometrial Stromal Sarcoma Ovarian Cancer stage IV
    I ran across your post and I am reaching out for help. I'm new to the cancer board my BFF has been recently diagnosed. The tumor was the size of a football attached the colon. They removed part of her colon and she has a temporary ostomy bag. They did a complete hystorectomy........15 day hospital stay now at home and starting chemotherapy on Friday. Any guidance, websites would be greatly appreciated.

    mine is leiomyosarcoma
    It sounds similar.
    I had radical hysterectomy and radiation. 2 localized recurrences, another radiation after surgery.
    Now I am on Sutent which is a targeted chemo drug, you take orally.
    I know it is typically tried with GIST, and they are experimenting with me, as I has one out of three markers for gist, which is a gastro intestinal stromal sarcoma.
    Not sure if this helps at all. But my thoughts are with you.
    Marisa
  • pjb53
    pjb53 Member Posts: 1
    #8
    Marisa Castelo said:

    mine is leiomyosarcoma
    It sounds similar.
    I had radical hysterectomy and radiation. 2 localized recurrences, another radiation after surgery.
    Now I am on Sutent which is a targeted chemo drug, you take orally.
    I know it is typically tried with GIST, and they are experimenting with me, as I has one out of three markers for gist, which is a gastro intestinal stromal sarcoma.
    Not sure if this helps at all. But my thoughts are with you.
    Marisa

    Ovarian Carcinoma Sarcoma
    I am 57 and was diagnosed with ovarian carcinoma-sarcoma in July 2009. Had a complete H......, followed by both chemo and radiation. Six months later I had a blockage and more surgery to remove & resect my colon. Another 5 months later I had a reoccurrence and more chemo. In April 2011, I was diagnosed with my third cancer in my kidney and abdomen. I am now going through chemo again as my doctor felt I was too weak for a 4th surgery. I have my 4th monthly chemo tomorrow. I also had 3 CT scans earlier this week to check the status of my tumors. Spread????
  • Barb N
    Barb N Member Posts: 1
    #9
    Ovarian Sarcoma
    It is Mar. 20, 2012 and I just read your 2008 post so I hope you are doing OK. My mom and grandmother both had ovarian sarcomas. My mom was treated by a fantastic doctor at the Univ. of VA Medical Center named Dr. Peyton Taylor. Originally diagnosed as having only 6 months life expectancy, she lived with the sarcoma for 14 years due to Dr. Taylor's expertise. Strongly recommend anyone with an ovarian sarcoma contact him.
  • RoseyR
    RoseyR Member Posts: 471 Member
    #10
    Barb N said:

    Ovarian Sarcoma
    It is Mar. 20, 2012 and I just read your 2008 post so I hope you are doing OK. My mom and grandmother both had ovarian sarcomas. My mom was treated by a fantastic doctor at the Univ. of VA Medical Center named Dr. Peyton Taylor. Originally diagnosed as having only 6 months life expectancy, she lived with the sarcoma for 14 years due to Dr. Taylor's expertise. Strongly recommend anyone with an ovarian sarcoma contact him.

    Do you Know what KIND of sarcoma?

    As there are several kinds of sarcoma, do you know which kind your mother and grandmother had? Was it stromal sarcoma?
    Or MMMT (Mixed Mullerian--also known as "carcinosarcoma")

    Best,
    Rosey
  • shannygold
    shannygold Member Posts: 1
    #11
    MMMT Sarcoma
    My Mom was diagnosed in May 2011 stage 3C OVCA with MMMT. she had six rounds of chemo (Carbo/taxotere), optimal debulking, six rounds of cisplatin/taxol and she recurred within a month. She was debulked again and MD said this is a "sarcoma" but we are waiting on path to start new chemo. Any one have any other successful chemo protocols?
  • pengelhard1
    pengelhard1 Member Posts: 4
    #12
    Also have carcinoma Sarcoma Ovarian Cancer

    Hello if you are still on this discussion board would love to chat with you about your treatments and such. I have just had first re-occurence after chemo and have not found anyone with a similarly diagnosed cancer.

     

    Pat

  • pengelhard1
    pengelhard1 Member Posts: 4
    #13
    shannygold said:

    MMMT Sarcoma
    My Mom was diagnosed in May 2011 stage 3C OVCA with MMMT. she had six rounds of chemo (Carbo/taxotere), optimal debulking, six rounds of cisplatin/taxol and she recurred within a month. She was debulked again and MD said this is a "sarcoma" but we are waiting on path to start new chemo. Any one have any other successful chemo protocols?

    Study being conducted at MD Anderson on Sarcoma Vaccine

    Hello,  I am just getting ready to do a study on a vaccine for sarcomas and ovarian cancer.  It is list on ClinicalTrials.gov. They are just recruiting now.

     

    Pat

     

  • apoohneicie
    apoohneicie Member Posts: 6
    #14
    pengelhard1 said:

    Also have carcinoma Sarcoma Ovarian Cancer

    Hello if you are still on this discussion board would love to chat with you about your treatments and such. I have just had first re-occurence after chemo and have not found anyone with a similarly diagnosed cancer.

     

    Pat

    Close

    Hi! I had stage IV uterine carcinosarcoma. It's not exactly the same, but pretty close. If you want to talk, let me know! 

    Much love, 

    April

  • Nori28
    Nori28 Member Posts: 1
    #15
    apoohneicie said:

    Close

    Hi! I had stage IV uterine carcinosarcoma. It's not exactly the same, but pretty close. If you want to talk, let me know! 

    Much love, 

    April

    my mother was recently diagnosed with uterine sarcoma. I'm devastated

  • Ilda28
    Ilda28 Member Posts: 8
    #16
    apoohneicie said:

    Close

    Hi! I had stage IV uterine carcinosarcoma. It's not exactly the same, but pretty close. If you want to talk, let me know! 

    Much love, 

    April

    Hello April

    I am sorry to bother you and I hope you are doing fine. I would like to know what kind of treatments you had. My mother was recently diagnosed and I would like to know as much as I can.

     

    Thank you

  • helris
    helris Member Posts: 4
    #17
    pengelhard1 said:

    Also have carcinoma Sarcoma Ovarian Cancer

    Hello if you are still on this discussion board would love to chat with you about your treatments and such. I have just had first re-occurence after chemo and have not found anyone with a similarly diagnosed cancer.

     

    Pat

    ovarian tubule carcinosarcoma to engelhard1

    This message was meant ot be to Pengelhard1

     

    I thought I answered to you, I'd be ineterested in exchanging experiences and thoughts

    We have similr disease and apparently we have had it  about same length of time.

     

    I just do not know how this kind of media works.

     

    All the best,

    Helmi

  • want_to_survive
    want_to_survive Member Posts: 8
    #18
    pjb53 said:

    Ovarian Carcinoma Sarcoma
    I am 57 and was diagnosed with ovarian carcinoma-sarcoma in July 2009. Had a complete H......, followed by both chemo and radiation. Six months later I had a blockage and more surgery to remove & resect my colon. Another 5 months later I had a reoccurrence and more chemo. In April 2011, I was diagnosed with my third cancer in my kidney and abdomen. I am now going through chemo again as my doctor felt I was too weak for a 4th surgery. I have my 4th monthly chemo tomorrow. I also had 3 CT scans earlier this week to check the status of my tumors. Spread????

    My mother 51 years of age is

    My mother 51 years of age is diagnosed with mmmt ovarian same as yours but her stage is 3c. She has been optimally debulked 3 weeks back and will start with chemo sessions from next week. after reading your post im really worried can u tell me what meds they treated u with? what were the side effects?

  • want_to_survive
    want_to_survive Member Posts: 8
    #19
    pengelhard1 said:

    Also have carcinoma Sarcoma Ovarian Cancer

    Hello if you are still on this discussion board would love to chat with you about your treatments and such. I have just had first re-occurence after chemo and have not found anyone with a similarly diagnosed cancer.

     

    Pat

    My mother has same as yours

    My mother has same as yours but shes recently being debulked chemo starts next week what meds were u treated with earlier? in how much time did it reoccur? What stage is urs? Were u given radiation as well?

  • fisherwoman123
    fisherwoman123 Member Posts: 1
    #20
    rhabdomyosarcoma in adult sister

    My sister had emergency hysterecoctomy with removal of one ovary in July> Diagnosed w rhabdomyosarcoma, late stage 3. We have been told she is not a candidate for chemo/radiation due to staging and complication from diabetes. She has had several foot surgeries. So very frustrating to think she has no option but to sit and die. 

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