New dx 4/23/18

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Hi I received my dx of Mmmt on 4/23/18. I was in shock well kind of still am as cancer does not run in the family.  I had a total/radical hysterectomy on 5/7/18 by a gyn/onc  at Stanford. I am very pleased with the care I have received thus far.  I saw my gyn/onc 5/24/17 for a follow up and staging. I was staged a 1a And Ned other then the 1st layer of uterus but uterus is gone now so cancer free for now. 24 lymph nodes removed also With Ne.  Due to the high rate of reoccurrence We discussed Chemo and radiation and will start in about 4 weeks.  We decided to be aggressive with the treatments due to the reoccurrence rate.  I will update more when I start treatment.  I am just looking for support from other women that are going through this or have gone through this.  I am really scared and also optimistic that I am going to beat this with no reoccurrence.  Thanks for listening.

 

Leisa

Comments

  • Jairoldi
    Jairoldi Member Posts: 221 Member
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    Welcome

    It sounds like you and your doctor have agreed on a plan. That is a great! I am about one year ahead of you having had surgery in May 2017. As the other ladies advised me, this is no picnic, but it is doable. 

  • gbazyl
    gbazyl Member Posts: 23
    edited May 2018 #3
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    Hello!

    Well you are certainly not alone on your journey...so many wonderful knowledgable women on this board.  I am a little ahead of you with the process...I have stage 1 UPSC.   Finished my HDR and just had second round of chemo on thursday.   You can do this!  

  • grace_of_god
    grace_of_god Member Posts: 31
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    Feelings

    You said it ... scared and optimistic.  It's a new feeling for me and not one I'm liking.  I am 9 days post surgery (robotic total hysterectomy plus lymph nodes) and am waiting for results.  My variety is Adenocarcinoma and I don't know what MMMT stands for.  I wonder if there is a list of Initialisms because there sure are a lot of them in these posts.  May I ask how old you are Leisa?  

     

  • Leisahardin
    Leisahardin Member Posts: 3
    edited May 2018 #5
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    Feelings

    You said it ... scared and optimistic.  It's a new feeling for me and not one I'm liking.  I am 9 days post surgery (robotic total hysterectomy plus lymph nodes) and am waiting for results.  My variety is Adenocarcinoma and I don't know what MMMT stands for.  I wonder if there is a list of Initialisms because there sure are a lot of them in these posts.  May I ask how old you are Leisa?  

     

    Mixed malignant mullerian

    Mixed malignant mullerian tumor carcinosarcoma.  It's a 2 cell cancel. It's very aggressiv and very rare.  I am 51.

  • Leisahardin
    Leisahardin Member Posts: 3
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    Thank you all for your

    Thank you all for your comments. I am glad I joined this group for support cause I felt so alone but now I know I am not.  i look forward to support each other on this journey ❤️

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
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    Mmmt

    Leisha, Welcome to this forum! It’s amazing how fast ones life and worries change when one is diagnosed with gynecological cancer. I am sorry that you are going through all of this. Glad you found this site for support and information. It takes time to wrap your mind around all that is ahead but truly staying present and trying not to get too far ahead of ourselves helps. ”One day at a time” A life lived by courage rather than fear....

    Peace and grace 

    Lori

  • cmb
    cmb Member Posts: 1,001 Member
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    Also have MMMT

    I'm very sorry to hear of your diagnosis. I can relate to the shock as I was also diagnosed with uterine carcinosarcoma (MMMT) cancer in 2016 and staged as IIIB after my surgery in December, 2016.

    While you're fortunate that your cancer was diagnosed, early, I agree with the plan to add chemotherapy and possibly radiation to address this aggressive cancer. My chemotherapy plan was a bit different than the 6 cycles of Paclitaxel and Carboplatin commonly used for MMMT cancer.

    I had 4 cycles of Paclitaxel/Carboplatin, followed by four cycles of lfex/Mesna/Adriamycin. The use of different drugs for "phase 2" was planned from the beginning and not the result of any allergic reactions to the first two drugs.

    If you click on my user name (cmb) in the blue panel to the left of this message you can read about my treatment and results to date. So far I am NED, but will have another CT scan in a couple of weeks.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,388 Member
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    Leisa, I don't know if you

    Leisa, I don't know if you really ever will wrap your head around the dx.  I am happy to hear it was caught early and that you have a good plan ahead of you.  You are not alone, so please, just ask anything.

  • hopeful56
    hopeful56 Member Posts: 73
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    I was diagnosed with stage 1a

    I was diagnosed with stage 1a grade 3 upsc.  I had 3 rounds of chemo for treatment after a hysterectomy.   So far  2 checkups (every 3 mos) with my 3rd coming up soon.  When I was first diagnosed, I was so scared and anxious.  Then I found this support group.  You have come to a great place for support with wonderful, brave and courageous women that will help you through.    This is what helped me , especially when I was going to have my first chemo treatment.

    I wish you all the best.

    Sandra

  • skshello
    skshello Member Posts: 13
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    Leisa, I don't know if you

    Leisa, I don't know if you really ever will wrap your head around the dx.  I am happy to hear it was caught early and that you have a good plan ahead of you.  You are not alone, so please, just ask anything.

    You are an inspiration to me right now, NO TIME FOR CANCER

    I started bleeding, and at 69 knew it was not normal.  Got a ultrasound, then a biopsy and they raced me to a complete  hysterectomy on 5/30/18.  WOW ..I had never even been sick ...so of course I started clicking the keys, and their prognosis is appalling.   THEN I saw this site, and especially your name and comments.  So, the meeting with the oncology doctor was a bit easier to take after you showed that there is life after the first shock.  He said that I was stage one until the FOCI(?) comment on the final report, and that kicked it into stage 3.  So..I am waiting for chemo appt, not sure when that will happen, but soon.  As I look at it, there is NO expiration date on the bottom of my foot.  I am a person pf faith, and know that what happens will be accompanied by the Lord's careful planning in my life.  I am so grateful to see that others have experienced what I am beginning to endure, and they have come through it.  Please know that I appreciate all comments here....   Sandy

  • LisaPizza
    LisaPizza Member Posts: 358 Member
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    skshello said:

    You are an inspiration to me right now, NO TIME FOR CANCER

    I started bleeding, and at 69 knew it was not normal.  Got a ultrasound, then a biopsy and they raced me to a complete  hysterectomy on 5/30/18.  WOW ..I had never even been sick ...so of course I started clicking the keys, and their prognosis is appalling.   THEN I saw this site, and especially your name and comments.  So, the meeting with the oncology doctor was a bit easier to take after you showed that there is life after the first shock.  He said that I was stage one until the FOCI(?) comment on the final report, and that kicked it into stage 3.  So..I am waiting for chemo appt, not sure when that will happen, but soon.  As I look at it, there is NO expiration date on the bottom of my foot.  I am a person pf faith, and know that what happens will be accompanied by the Lord's careful planning in my life.  I am so grateful to see that others have experienced what I am beginning to endure, and they have come through it.  Please know that I appreciate all comments here....   Sandy

    I also have stage 3 (3a, in

    I also have stage 3 (3a, in left ovary). There some scary statistics out there, but there are also some pretty good ones. They vary so much depending on the study particulars. I finally decided I didn't want any more detail than: (1) it can definitely come back, and I should definitely have my affairs in order where needed, I need to follow up carefully and live as healthy as possible, and I need to make the most out of every day; and (2) I can definitely survive and never have a recurrence, so I can choose to believe that until things change, if ever - and even if it never comes back, doing all the things in (1) will still make my life better.