UPSC: 11 years NED

LizGrrr Member Posts: 127 Member

Hi all - it’s been awhile since I’ve posted so wanted to pop in! 2 months ago I celebrated my 12-year cancerversary. I was surprised with a UPSC diagnosis 10/20/11 after a robotic hysterectomy (had a fibroid in an awkward spot near my cervix - dr tried a D&C but I had a septum in my uterus [im just full of surprises] hence the hysterectomy and subsequent dx from pathology). I was 45 years old, pre-menopausal.

After the dx I had a laparotomy and was staged 1A - incredibly fortunate. Oncologist said ‘you’re cured’ which didn’t feel right; switched oncologists, had 3 rounds of carboplatin/taxol, 25 rounds of external radiation, and another 3 rounds of chemo.

The prognosis of early stage dx still stinks, but survivorship can happen. I still worry about recurrence but my onco released me from annual follow-ups at my 10-year mark so there’s that.

Cheering on those who are undergoing treatment and those whose treatment is in the rear view mirror.


  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,358 Member
    edited November 2023 #2

    CONGRATULATIONS LIZ!!!!!!!!!! SO happy for you and I hope you do something special for yourself to celebrate.

    Thinking back to the early, frightening days only adds so much happiness for this kind of news.


  • BluebirdOne
    BluebirdOne Member Posts: 656 Member

    Thanks, Liz, for coming back to let us know of your incredible 12 years! Such good news that we have long term survivors who come back to tell us the good news.


  • ConnieSW
    ConnieSW Member Posts: 1,678 Member
    edited November 2023 #4

    LIZ, I am absolutely delighted to learn you are doing well. I’ve thought of you often over the years. You made my day!

    Am I correct that they morcellated your uterus? If so, that makes your survival even more exceptional.

  • cmb
    cmb Member Posts: 1,001 Member

    Love to read stories about long-term NED - thanks for coming back to let us know.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,358 Member

    Liz, I am right behind you. 11 years on 12/19 for me! Figured I would just celebrate with you!

    (I had sisters in town and we had dinner at a nice Brazilian restaurant. Had to celebrate!)

  • ShelaghE
    ShelaghE Member Posts: 7 Member

    I think that women don’t know the risks of morcellation. My best friend got morcellation for uterine fibroids. What she did not realize that morcellation basically shreds the tissue prior to it being vacuumed out of the abdomen. Because they found cancer, this procedure resulted in the cancer cells being spread throughout the abdomen, and the subsequent metatastises were found along the sites where the three robot arms entered the abdomen. Despite two grueling rounds of chemotherapy, my friend died within two years. I think that this procedure shoukd be banned. So many women have fibroids and so many women have what is supposed to be “easy” surgery. But the standard “invasive” surgery does not risk the life of those women who actually have cancer, not just fibroids .

    tell your friends.

  • Forherself
    Forherself Member Posts: 963 Member

    I have read that morcellation is not used anymore if there is a suspicion of cancer. I think it is sometimes used for heavy periods. I would refuse the procedure, and agree with you.

  • LizGrrr
    LizGrrr Member Posts: 127 Member

    Wow Connie - great memory! Yes had the morcellation which a few years later was found to have done exactly what Shelagh described - sent the tumor cells flying! The info I fired was satisfied that the subsequent laparotomy was all that needed to be done, but the info I moved to told me I had one chance to nip this in the bud and I should throw everything I had at it.

    I was a pre menopausal 45 year old and was deemed a low risk of cancer so the dx came as a surprise.

    it appears I’m lucky to have had a fibroid which was the reason I went in for a d&c in the first place, and the presence of the uterine septum led to the hysterectomy. If my PCP and gyno had just shrugged things off the way my sleep dr had done (sleep doctor said my symptoms were just pre menopausal- yes sleep dr was a man) I wouldn’t have caught this in the earliest stage.

    Even though it was the onco that led the surgery, chemo and radiation it was my female PCP and female gyno who saved my life

  • LizGrrr
    LizGrrr Member Posts: 127 Member

    Auto correct sucks. Info = onco 🙄

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member

    That is wonderful! I'm almost nine years now, showing UPSC is survivable.



  • jan9wils
    jan9wils Member Posts: 202 Member

    WooHoo! What wonderful news. Congratulations LizGrrr.