Six years no recurrence after uterine serous/clear cell stage 1a with isolated tumor cells in node

zsazsa1
zsazsa1 Member Posts: 568 Member
in Uterine/Endometrial Cancer #1

Hi. I'm coming up on the six year anniversary of my diagnosis and treatment for uterine serous/clear cell cancer. Mine was in the upper part of the uterus, and one sentinel node had isolated tumor cells in it. I was treated with hysterectomy, 6 rounds of carboplatin, Taxol, and added in Herceptin, which was not standard at that time. I then had radiation - only vag cuff was recommended, but my feeling was that since it had been in the top of the uterus, not the bottom neck, and since it was found to be out in the lymph nodes, I needed radiation in those areas. So I had pelvic IMRT radiation directed at the lymph node beds.

I just recently had a PET/CT scan for a different reason, and no recurrence of the uterine serous/clear cell was found.

My diagnosis had been delayed for a year by bad advice from my GYN. If a woman has a change in vaginal discharge, especially if you're post-menopausal and have no chance of an STD causing it, it can be a sign of uterine cancer. Do not wait for blood. If you have increased clear discharge with no other cause, insist on a workup - transvag ultrasound, biopsy, etc. And if there's any excuse for a hysterectomy, have it! The surgery was nothing. The chemo and radiation were tough, with the unfortunate potential gift of long-term or delayed toxicity.

I come back on here every year to tell women that there is hope of a cure, even with this highly aggressive cancer. I thought I'd be dead in a year when I was diagnosed. Women on this board who were long-term survivors of this cancer gave me hope; I come back each year to give others hope, too.

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,493 Member
    #2

    zsazsa, so happy for your continued NED! Also, thank you for stopping in to post. As you said, it is good for anyone who finds us to know there is hope. I hope you did something VERY SPECIAL for yourself. Yeah!!!

    NoTime

  • Kim25
    Kim25 Member Posts: 26 Member
    #3

    thank you for stopping into post

    You are so correct! !!

    You are so wise!!


    I was premenopausal I had leaking fluid (not blood), I asked if cancer, they said no, did an ultra sound and lots of labs…9 months later they treated it as an infection, did biopsy and it was negative (they must have biopsied dead tissue as the cancer was bad). 11 months later they did a Leep Procedure and after labs and then scans… stage 4b

    Please tell All women, ask for proof it’s not cancer in the start. It’s sad they keep missing cancer. A biopsy might have caught it sooner.

    Thanks again for your post.

  • JDauer
    JDauer Member Posts: 2 Member
    #4
    https://csn.cancer.org/discussion/328536/six-years-no-recurrence-after-uterine-serous-clear-cell-stage-1a-with-isolated-tumor-cells-in-node

    Thank you for your message. I am brand new at this. I have a D&C and hysteroscopy in November. I am 3 years in menopause and started bleeding. For the past month I have bled every week except for 1. Had the ultrasound, lining is thick hence the scheduled biopsy. The waiting sucks and I know after the biopsy that waiting will be torture as well. I'm scared and nervous. These messages give me hope. Thank you for sharing.

  • Ribbons
    Ribbons Member Posts: 154 Member
    #5

    Hello, I was diagnosed and had treatment about the same time as zsazsa1, also clear cell. I have had no recurrence. 😊

  • CaSux
    CaSux Member Posts: 1 Member
    #6

    Thank you for your post. “newly” diagnosed advanced stage endometrial cancer and I can’t convey how important your comments about symptoms are. Mine was a pink, ”goopy” intermittent discharge that I assumed was a normal change in regular menstrual cycles leading to menopause - the period/bleeding decreasing/lessening because it was “winding” down preparing to stop/end.

    I went to my gyn over a two year period reporting symptoms, and I was essentially dismissed. I was told it was not gynecologic and was advised to consult a GI doctor. Exam normal; PAP normal; transvaginal ultrasound negative. Had they done blood work for cancer markers, hormone levels, MRI or a uterine biopsy (earlier/initialy), I may have had an earlier diagnosis with a better outcome, but nothing more was ordered or suggested (female practitioners). Eventually (due to severe intractable pain), sedated biopsy revealed the initial tumor.


    Seeing/learning that there are greater than 2 year survivors for this type/stage cancer is encouraging especially when one’s own oncologist can’t/won’t estimate one’s prognosis (maybe this is their normal/standard response).


    Congratulations to you for your courage and persistence through your journey and for your positive PET results.
    I say courage/courageous because it is such a roller coaster of emotions and you continued through everything - fear, doubt, disappointment, disbelief, anger, pain and who knows what other things you experienced along your path.
    Thank you for sharing your experience.


    Positive thoughts to you.

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