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Stage 4 carcinosarcoma of uterus (lung mets) still cancer free

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Comments

  • evertheoptimist
    evertheoptimist Member Posts: 140
    maryv1119 said:

    To JMSaussy
    Thanks so much for your story, it encouraged me greatly.

    Sept. 2010, My Dx was endometrial cancer grade 3 stage 3CII, and a uterine sarcoma with mets to the vagina. I was 40 when i had my hysto. I had 5 weeks of daily pelvic rad, with 5 treatments of low dose Cisplatin weekly. Then I had 3 internal rad treatments and 6 treatments or carbo/taxol - last of which was May 12 2011.

    I'm not sure exactly what type of cancer I have (UPSC - MMMT) I've asked my Dr and his RN to explain it to me - they immediately change the subject. I'm not depressed or fatalistic, so I don't understand why they won't explain in detail what I have and what my prognosis is - I know it isn't great.

    Anyway, I also feel like cancer has made me a better person. I've grown closer to my family, to God, and have a renewed sense of joy for each day that I'm given. I may have cancer, but cancer does NOT have me.

    Good luck to you and everyone here.
    Mary V.
    Joliet IL

    mary,
    you can get hold of

    mary,

    you can get hold of the pathology report. It will tell you what type.

    I think it's well worthwhile reading it and find out what type yours is. For instance, if it is UPSC (like mine), it behaves very much like ovarian cancer. In such a case, for you to stay on top of the latest development in the ovarian cancer research will make you an empowered and informed advocate for yourself. UPSC is so rare, there isn't really much independent research on this, and most of the research on a vast majority of the uterine cancer does not really apply to us.

    Good luck
  • RoseyR
    RoseyR Member Posts: 471

    Rosey, Thank you for your
    Rosey, Thank you for your kind words! And you pose some good questions - which I also intend to pose to my Drs. Both Med Onc and Gyn Onc referred to cancer as 'papillary serous' from the get-go and I received the usual carbo/taxol, 6 rounds. I just assumed the dominant cell type determined treatment or never questioned the choice. It's been several years now and I am treated by a different gyn onc necessitated by insurance changes. However, I am working towards revisiting with orig gyn onc and clarifying some details.

    Also, as part of this process I have been reviewing my extensive records and without chemo brain, I've read all reports in more detail. I had never seen my earliest records from when I had some significant bleeding issues two years prior to this diagnosis. I underwent a D&C at that time with numerous polyps found. I have concerns about the technique described for this procedure in which the Gyn initially infused a large volume of saline into the uterus but when only about two-thirds was returned, concern for potential overhydration led him to proceed to use forceps to remove a portion of the extensive number of polyps, the remainder were evaluated during debulking. No neoplastic disease was identified. The opinion at time of debulking surgery was that primary must have been 'missed' during D&C. My concern is that the cells were forced into the peritoneal cavity via the fluid that failed to return and began to spread from there. There was no cancer found in uterus during debulking but growths on ovaries appeared to be metastatic not primary, hence the presumed 'endometrial origin' of cancer. I believe an 'unremarkable' leiomyoma was also found. I'm not sure if clarifying these issues will make any difference, but 'inquiring minds' like to know.

    I'm glad yours was caught early and hope your extensive treatment will result in a cure!
    Annie

    Thanks, Annie!

    So appreciative of these clarifications and realize why your question your D and C procedure; in Knockout, Suzanne Somers interviews some alternative oncologists who open our eyes to possible dangers in these initial procedures. Even the WAY we are admiistered anesthesia, according to one of them, can make mets more likely or less likely. Yet so many treatment centers are wed to the traditional protocols and if we question them, we are met with shrugs.

    You are such a beautiful woman both in spirit and appearance (wish I knew how to send a photo to this site but even if I did feel I need to be less public for a while; don't want anyone from work to be lurking on this site but not sure if I need to worry about that; suppose it's pretty secure, or not?) that I instinctively think you 're going to be around for quite a while, Annie.

    Hope you have a good support system for you surely deserve it!

    xo,
    Rosey
  • lilgalfromin
    lilgalfromin Member Posts: 2
    jmsaussy said:

    mary ann
    mary ann-

    yes emergency medicine physician...trained at Charity...work at "new" charity hospital trauma center called University Hospital or LSU Interim...moving to DC area this fall though after 30 years in NO...engaged to an awesome guy who lives and works here so big changes
    I had my port removed the fall after chemo...I believe 2008 because I did not need it anymore as I was told even if recurrence, chemo not an option...so, I had a friend surgeon take it out...it was no big deal and but for the scar, no issues....it seems almost like a badge that I show only a few people...mainly other cancer patients that I see in my ED to let them know I really do get it and how bad or scared they might be feeling at that moment...what is UPSC? Unknown primary?
    J

    Looking for some advice on moms rare adenocarci 38 yrs after hys
    my mom n law had a total complete hysterectomy 38 years ago due to endometriosis. Now, 38 years later she started bleeding, went to GYN, did biopsy, told it was malignant, she went today and met with ONC/GYN surgeon and also got her CT results. not good news. multiple pelvic masses.. one is causing a blockage of her kidney. They saw a small nodule on lung, a small mass on colon, mass on bone.. Dr said surgery wasnt really an option because she would lose too much blood or can go into cardiac arrest. She asked him point blank how long does she have to live, he said he didnt know. So to me, thats better than given a time frame.

    I am very scared for her and my family. My kids are very young and are too young to lose their grandma. Its just devastating. i dont want to lose her and I dont want her to suffer. Can someone please tell me anyone who has this same situation. Dr of course said she was a rare case. They think a flap of skin was left behind and her estrogen taken for 30 years fed into the skin/cells left behind and thats where the cancer came from. if thats the case, I say everyone sue these estrogen companies. They are killing people. Please someone help me come to terms with all of this. are we talking she will be gone within a year, two years??
  • terijacobs
    terijacobs Member Posts: 1
    metastatic uterine carcinosarcoma
    Hi Jmsaussy- hope you are doing well. Who was the oncologist at Sloane if you don't mind my asking. Also, do you know anything about Radiofrequency ablation for lung mets? Thanks
  • Roena
    Roena Member Posts: 19
    THANK YOU!

    New to this site and still wandering around when I found your incredibly uplifting story.  I'm still wondering where this all came from - no discomfort or bleeding, just bloating that came and went.  Having been a support person for a friend who went through a siege with breast cancer, I lost my fear of the dreaded disease that claimed almost all my family on my mother's side.  I KNOW it can be beaten back! 

    Thank you, thank you, thank you for coming forth with your experience.  Live long and prosper!

  • Sisters three
    Sisters three Member Posts: 165
    Roena said:

    THANK YOU!

    New to this site and still wandering around when I found your incredibly uplifting story.  I'm still wondering where this all came from - no discomfort or bleeding, just bloating that came and went.  Having been a support person for a friend who went through a siege with breast cancer, I lost my fear of the dreaded disease that claimed almost all my family on my mother's side.  I KNOW it can be beaten back! 

    Thank you, thank you, thank you for coming forth with your experience.  Live long and prosper!

    Roena - Live long and Prosper

    imageI am hoping my picture of  Spock came through. A Trekkie fan? can it be????? 

  • Vivien_NYC
    Vivien_NYC Member Posts: 2
    MSK

    Jmsaussy: would you mind sharing which doctors at Memorial Sloan Kettering you saw? I am urgently trying to relocate my mom from overseas for the treatment in the US. - Vivien

  • Vivien_NYC
    Vivien_NYC Member Posts: 2
    Carninosarcoma (MMMT) doctors in the US

    Does anyone have recommendations for Uterus Carninosarcoma/MMMT doctors? I got some names at Memorial Sloan Kettering. What other hospitals/doctors are highly rated (ideally in New York, but if not, elsewhere in the US)?

    Like many of you here, my mom was diagnosed with MMMT few months ago. She is a non-US citizen and getting her treatments outside the US. I am thinking about getting her treated in the US to get her the best care (though issues such as costs, etc, remain).

     

     

     

  • Teamkelly
    Teamkelly Member Posts: 63

    Carninosarcoma (MMMT) doctors in the US

    Does anyone have recommendations for Uterus Carninosarcoma/MMMT doctors? I got some names at Memorial Sloan Kettering. What other hospitals/doctors are highly rated (ideally in New York, but if not, elsewhere in the US)?

    Like many of you here, my mom was diagnosed with MMMT few months ago. She is a non-US citizen and getting her treatments outside the US. I am thinking about getting her treated in the US to get her the best care (though issues such as costs, etc, remain).

     

     

     

    Sloan Kettering

    My sister in law saw Dr. Hyman. He sits on an international board fab out uterine carcinomasarcoma. He confirmed that the treatment she was going to get in California was the same treatment they used at SK.  Hope this helps. By the way I went with her and really liked him.