Newly Diagnosed with stage 4b MMMT

Julie_123
Julie_123 Member Posts: 17 Member
edited February 2022 in Uterine/Endometrial Cancer #1

I just recently had a radical hysterectomy and the pathology report came in as Edometrial Carcinosarcoma Maligment Mixed Mulleran Tumor Carinoma componet high grade serous type Stage 4B. I have it in lymphodes, one ovary (removed),  the Doc said it was also hanging off the colon, rectum, and bladder and its in my Omentum...

It takes you back, getting a diagnois like this. Makes you want to stop and semll the roses.  I am terrified. 

I am supposed to start chemo soon. I am not sure what to expect. Given the survival rate for this for what I have, and my prognosis, I am not even sure I should go through with the Chemo. Quality vrs  Quantity. 

I Know that what I am saying sounds like I am on a real downer and negative...but I am not... I will go through what ever trial God wants me to go through....I am hoping I will feel his loving kindness as I go through this what ever it is. Not looking forwrd to Chemo...loosing my hair, throwing up...

But, if it gives me another day to be with my Cat... and paint..I am the worlds worst artist...but I enjoy it. 

What I am really wanting to know if there is anyone who has MMMT...less than 1000 people are diagnosed in a year.

I started My Journey last May when I  started bleeding. At first I thought I was just having a period. I went and looked on the internet when it did not go away after 5 days, and saw that it could be cancer. 

I went to the OBGYN who was amazing by the way. She tried to do a byopsy but could not do it; the pain was excrusiating. So they tried an ultrasound, with the same result.

Then she decided a D&C and put an IUD, treat it like pre cancer until the pathology report comes in and says that it is. She set me up with the first available  OBGYN, who was also amazing. The  pathology came back as High grade edometrial spindal cell sarcoma.  I had prepared my self for the bad knews.... They sent me to the OBGYN oncologist and did my hysterectomy on the 19th, and he gave me the final pathology report on the 24th. 

As soon as I heal from the hysterectomy we are supposed to start the chemo process. 

I have what seems like a million questions and issues to figure out. I am overwhelmed. This week is so much better than last week though. I started back to work, working from home and it has gotten my mind off my troubles.. 

 

Anyway that is my story, If anyone is going through the same cancer I would love to hear from you, about your journey. What to look out for.  and what to expect...I feel like I am going hiking at night on a nigth with no moonlite or flashlite. 

Kindest Regards, 

 


Comments

  • ConnieSW
    ConnieSW Member Posts: 1,678 Member
    edited September 2021 #2
    Oh, Julie,

    I am so sorry this has happened to you but so glad you found your way here.  I hope having us will make you feel less alone.  It certainly did me.  I didn't  have the same type of tumor as you but it was a grade 3 and I have yet to meet someone in my community (a small city of 20,000) with the same diagnosis.  This site was a godsend.  

    Keep  reading through the old posts.  There is so much information and comfort here.  I spent several days doing that and 9+ years ago, there was much less.  Of course you are terrified.  Most of us did find chemo very doable.  Right now, just concentrate on healing from the surgery then move forward one step at a time.  There are women here with what you have.  They will be along shortly.  I am holding you in my thoughts

  • Forherself
    Forherself Member Posts: 963 Member
    #3
    Welcome to the board

    SO sorry to hear what you are dealing with.  It is impossible, in my opinion, for anyone to know how it feels to be told you have cancer, unless it happens to you.  Your feelings are all welcome here.  I hope you have read posts of other women with your diagnosis.  Pinky is no longer with us but survived for many years with stage 4 endometrial cancer.   There are others too.  And others with MMMT who will comment.  I just wanted to let you know this is a safe place for your emotions.  

  • Julie_123
    Julie_123 Member Posts: 17 Member
    edited September 2021 #4
    ConnieSW said:

    Oh, Julie,

    I am so sorry this has happened to you but so glad you found your way here.  I hope having us will make you feel less alone.  It certainly did me.  I didn't  have the same type of tumor as you but it was a grade 3 and I have yet to meet someone in my community (a small city of 20,000) with the same diagnosis.  This site was a godsend.  

    Keep  reading through the old posts.  There is so much information and comfort here.  I spent several days doing that and 9+ years ago, there was much less.  Of course you are terrified.  Most of us did find chemo very doable.  Right now, just concentrate on healing from the surgery then move forward one step at a time.  There are women here with what you have.  They will be along shortly.  I am holding you in my thoughts

    Hi ConnieSW,

    Hi ConnieSW,

    Thank you so much for your kind words of encouragement. I already had two Angels on earth, who had mothers who are experiencing the same thing. They gave wonderful insight. 

    I now know of a few things I must look into. It was so encourging. Really energizing...I am still not looking forward to Chemo...but I do feel the path ahead is a little more illuminated than I did yesterday.. And I do feel less alone. 

     

    Kindest Regards,

    Julie123

  • Julie_123
    Julie_123 Member Posts: 17 Member
    edited September 2021 #5
    Forherself said:

    Welcome to the board

    SO sorry to hear what you are dealing with.  It is impossible, in my opinion, for anyone to know how it feels to be told you have cancer, unless it happens to you.  Your feelings are all welcome here.  I hope you have read posts of other women with your diagnosis.  Pinky is no longer with us but survived for many years with stage 4 endometrial cancer.   There are others too.  And others with MMMT who will comment.  I just wanted to let you know this is a safe place for your emotions.  

    safe space

    Hi Forherself,

    Thank you, for your kind and encouraging words, I have already gotten two posts for two other women with Mom's with MMMT. They both gave me great insight and ideas to look into. I am so grateful to them. I have serveral things to look into. I have been reading other posts...about the experiences others are going through. It really is making me feel less alone.

    I have so many dear friends that have reached out to me and I am so blessed to have them in my life...I don't think there is a person I know who has not, at some time or another, had a freind and or a family member that has gone through a cancer diagnosis and I am no exception.  You are so right, until you know its happening to you....you really don't get what a jolt this is when its you...I am so thankful for a safe space.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
    #6

    Julie, how are doing? I have uterine MMMT. I just finished my 6 rounds of Carbo-Taxol and 5 rounds of brachytherapy radiation. Next scan is early March. I'm doing okay & will be thinking of you.

  • cmb
    cmb Member Posts: 1,001 Member
    #7
    https://csn.cancer.org/discussion/comment/1693882#Comment_1693882

    Julie_123 hasn't logged in since October, so she may not see your post. You can always check when someone was last on by clicking on their user name.

    Glad to see that you've finished treatment and hope that you get good news at your next scan in March. I'm still NED five years after surgery and 4.5 years after the end of treatment for Stage 3B MMMT.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
    #8
    https://csn.cancer.org/discussion/comment/1693885#Comment_1693885

    So glad to hear that, cmb; huge wishes for your continued wellness (and mine!)

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