3 Years NED with Uterine Carcinosarcoma (MMMT)

cmb Member Posts: 988 Member

I'm conflicted in posting this. On the one hand I know how important it was for me when I was first diagnosed to learn that some women with my type/stage of cancer (Stage 3B, Grade 3 uterine carcinosarcoma or MMMT) did survive longer than the typical statistics.

On the other hand, I feel so badly for those women who haven't been as lucky as I have been. But I'm aware that my cancer could return at any time and, as someone with Lynch Syndrome, I realize that another cancer type could also pop up in the future.

Nonetheless, it's been three years since I finished treatment and almost four years since my surgery in December 2016. Once I hit the 2-2.5 year mark after surgery (the usual time period for MMMT recurrences), I began to feel as though I was gaining "found time." So regardless of what happens in the future, I'm grateful for this period of NED and strongly wish that others can experience the same.

For those just starting their treatments for aggressive types of uterine cancer, my experience shows there definitely is the possibility for longer periods of remission than you might have thought when starting this journey none of us chose to take.

However, I didn't come through treatment unscathed. I developed neuropathy in the balls of my feet and toes after my last chemo treatment. I also developed lymphedema in my legs about 2 years after treatment. And I was one of those women whose hair grew back the same as before treatment, only much, much thinner. But these are all minor inconveniences compared to the treatment side effects that others suffer from. Overall, I feel about the same as I did before cancer.



  • BluebirdOne
    BluebirdOne Member Posts: 630 Member
    edited September 2020 #2
    Congrats, cmb!

    Anytime anyone survives three years is a time to celebrate! Giving others hope about their future is as important as all of the other valuable stuff we talk about. We need the success stories!



  • els19
    els19 Member Posts: 106 Member
    edited September 2020 #3

    Congratulations CMB, that is great news! I think everyone needs hope that we can survive and at least have long periods of NED. Thanks for posting your news. I am very happy for you!

  • Armywife
    Armywife Member Posts: 450 Member
    Best News!

    I rejoice with you and am so thankful to read these words.  I do understand the mixed feelings as well - I am the last of my "chemo buddies" still NED, and I struggle with the same feelings as you do.  We miss our sisters who have passed in these past three years.  But you are absolutely right that we all cling to each other's success stories and we need to hear them too.  

    C, you have been an amazing blessing to all of us here with your faithfulness to the group, your genius with organizing and providing information, and so many other things.  I'm so happy to "know" you.  I am praying to reach the three-year mark in just another two weeks - the "scanxiety" is real right now.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,246 Member
    edited September 2020 #5
    dearest cmb, I can completely

    dearest cmb, I can completely understand your feelings.  However, celebrating anniversaries are important and none of us know what the future holds, so do something special for yourself.  Congratulations.  I don't think there is one woman here who would be mad about your wonderful anniverisary.  

  • MAbound
    MAbound Member Posts: 1,166 Member
    Ditto all of the above!

    I really hear you regarding the guilt that goes along with the happiness of continued NED, but it's important to give ourselves a pass on that guilt because our NED does matter to more than just ourselves. If our stories were all just doom and gloom this site wouldn't be as valuable as it is, so go ahead and celebrate and know that we are all celebrating vicariously with you! We all need it as much as you do, especially this year.

  • cmb
    cmb Member Posts: 988 Member
    edited September 2020 #7
    The Beauty of this Site

    Everyone's responses to my post are why this site is so important. While other people are happy to hear when we're NED, I think only those who have lived through their own cancer experience really understand ambivalence we feel at times. You've all expressed this contradiction so eloquently!

    But all of you are also right. I need to enjoy the moment,  for as the saying goes, "this moment is all we're ever promised."

    Thanks for the support and good wishes, ladies!

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    edited September 2020 #8
    What else is so precious to

    What else is so precious to newbies than hearing stories that give hope? Precious for us one or two years out too, as the anxiety can lie just beneath the surface at all times. So happy for you.

  • Molly110
    Molly110 Member Posts: 191 Member
    edited September 2020 #9
    Wow, congratulations. I

    Wow, congratulations. I imagine that all of us are celebrating with you, regardless of where we are in our own journeys. Hope and happy stories are wonderful things.

  • Quilter_1
    Quilter_1 Member Posts: 117 Member
    edited September 2020 #10
    Congratulations on your

    Congratulations on your milestone, 3 years is certainly something to celebrate.  I just had my 2 year anniversary since my diagnosis with UPSC.  I wish you many more years of NED.  We all leave treatment with a few leftover side effects, but, life is great inspite of a few lemons.  I love lemonade, especially, with a little vodka (ha).  Live happy.

  • MoeKay
    MoeKay Member Posts: 453 Member
    So Happy For You, CMB!

    This is truly great news, cmb!!  I'm so happy that you've reached the three-year NED milestone.  I remember what a significant one that was for me and how thrilled I was to pass that marker.  We always need good news, but I think now more than ever during these trying times!!  Wishing you many decades of continued NED.  And thank you so much for all you've done for us on this board.  You're the best.  Now it's time for some big-time celebrating!!!!

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    edited September 2020 #12
    Great news! I understand your

    Great news! I understand your mixed feelings. But it's important to celebrate our anniversaries. It gives all of us a chance to cheer and hope.

  • Fridays Child
    Fridays Child Member Posts: 271 Member
    edited September 2020 #13

    It's always good to hear good news!

  • Primavera
    Primavera Member Posts: 231 Member

    Enjoy this milestone. And thank you for telling us all about it. Some women will come here scared about their diagnosis and will feel better after reading this post. You give hope to so many.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited September 2020 #15
    Such a great milestone!!!!

    Such a great milestone!!!! Congrats CMB. You are loved and appreciated here and we all celebrate with you! Please do something special. 

    Thank you for posting. The good news we all share is very welcomed!

    Love and Hugs,


  • Kaleena
    Kaleena Member Posts: 2,088 Member
    edited September 2020 #16

    Thats what I like to hear!



  • ConnieSW
    ConnieSW Member Posts: 1,646 Member
    edited September 2020 #17
    Party on

    Thanks for inviting us to share in your celebration.  We need every bit of good news we can get in these days.  I'm looking forward to joining you again next year. 

  • EZLiving66
    EZLiving66 Member Posts: 1,477 Member
    edited September 2020 #18
    Congratulations! Any

    Congratulations! Any milestone with these aggressive cancers is worth celebrating. So many times women come to this site and all they see are failed treatments, recurrences and sadness. It's so good to see recoveries, remissions and happiness!!



  • Maxster
    Maxster Member Posts: 102 Member
    edited September 2020 #19

    It is reassuring and wonderful to learn of these milestones.  They give hope to us all!  I am very happy for you.

  • Forherself
    Forherself Member Posts: 898 Member
    edited September 2020 #20
    Thanks for sharing

    your great news. May it last forever.  I hope this page is for everyone who has uterine cancer, no matter what.  

  • oldbeauty
    oldbeauty Member Posts: 336 Member
    edited September 2020 #21
    Please don't hesitate to share, cmb

    You have a serious disease, MMMT, and you are 3 years NED! Why shouldn't you shout from the rooftops if you want?  I have the garden variety endometrioid adenocarcinoma and I am 15 years and 3 battles in.  I'm here for the longhaul, and I think it does help the newly diagnosed to see that there are long-time survivors.  Even if our cases don't match up, it's still an antidote to the dispiriting statistics one sees when reviewing the medical literature, especially the older articles.  Sometimes I feel guilty that I'm not "sick enough" to comment on posts.  But there are and have been plenty of women over the years (I've followed this board since 2012) who have so much knowledge and experience and so much grace in sharing with us all that even the ladies who take posting holidays come back to visit and share some more. 

    You, cmb, are one of several here who are in a class by themselves.  Not only do you share about your own journey, you saved our bacon when the Boards got hacked and we lost so much history, drawing on your obvious computer skills.

    So, congrats on your milestone and may there be many more.  Best wishes, Oldbeauty