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Endo thickening and heavy bleeding 2 years after Tamoxifen

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I'm 56. Had bilat mast, chemo in 2011, then tamoxifen for 10 yrs ending 11/2021. Hadn't had a period since chemo at age 43. Had routine screening pelvic/tva in Feb. not because of symptoms, but mom died of ovarian ca, and because I was concerned about years of Tamox. It should 12 mm abnormal thickening. Uterine bx in Mar. showed "normal" and gyno even commented based on images from hysteroscopy that uterus didn't even look thickened to him, but nice and "smooth". So I was relieved but little confused.

Now, 6 mos later I started heavy bleeding w/ clots and cramping like I was 20 yrs old again. pelvic/tva again shows abnormal thickening. I'm waiting on gyno to call w/ results and plan of action. Hoping something wasn't missed somehow before. I assume he'll suggest D&C or even hysterectomy. Anyone with similar situation? Obviously concerned about uterine cancer. Thank you.

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  • moderators
    moderators Posts: 8,056
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    Welcome, @dbmusic, we're so sorry you find yourself here with this concern. We absolutely understand your worry! We have a couple of very informative threads we'd like to recommend, if you haven't read through them already. Bottle o' Tamoxifen is a very comprehensive thread with many contributing members sharing their experiences on and off tamox. And Quitting Tamoxifen addresses some symptoms others have experienced after stopping the therapy (either early or after the prescribed length of time).

    We hope you hear back from your gyno soon, with a plan in place to figure out what's going on. Certainly your concerns are valid, given your mother's diagnosis and your years spent on Tamoxifen. Please do keep us posted on where you go from here.

    The Mods

  • ab45
    ab45 Member Posts: 153
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    Hi,

    Not sure if you saw my thread. I am also a tamoxifen user. My lining was over 20...I had a DNC and a hysteroscopy...I go back next month to check again...I completely understand ur concern..Tamoxifen does put us at a higher risk for uterine cancer...

  • dbmusic
    dbmusic Member Posts: 3
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    Did you already get your results from DNC pathology or would that be not til next month? At this point, I have appt with gyno to discuss DNC or hysterectomy which I think I'm leaning toward. Haven't been able to talk over phone with him, playing phone tag w/ him and some miscommunication with his office. Frustrating!! But his voicemail giving me results after the ultrasound said he wasn't overly concerned since we just did biopsy and hysterocsopy 8 mos ago which were clear, yet he admitted he can't explain the bleeding and suggested I could even just ignore it or DNC perhaps. The ignoring part is a rediculous option in my opinion. Trying to be patient. Have sit down appt with him next Tuesday.

  • dbmusic
    dbmusic Member Posts: 3
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    Thank you moderators. I will check out the threads you mentioned. I went silent after my post because I got a stomach flu in bed for couple day! When it rains it pours. Much better now and awaiting my gyno appt next week to discuss options. Can't imagine why I wouldn't opt for hysterectomy at this point with my history, mom's ovarian ca history, already been in chemo induced menopause for 12 years, and now the unexplained heavy bleeding. But we will see what he recommends at this point.

  • rnjen
    rnjen Member Posts: 16
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    Sorry to hear you are having these issues. I am a year out now from starting Tamoxifen ( 44 years old when diagnosed last year ) I am premenopausal. My periods stopped completely about a month after starting Tamoxifen. This summer I suddenly had severe bleeding and was passing huge clots that landed me in the hospital a couple times. I did get a D&C to stop the bleeding and they did biopsies for cancer also which were negative. My uterine lining was 24 mm at the time. Anyway, long story short I kept having severe bleeding so I had a hysterectomy leaving my one remaining ovary. Best thing I ever did. No more worries of uterine cancer and no more bleeding. They did my surgery completely vaginally so no incisions on the outside of my body. After about 5 days I felt good and I only took Motrin a couple times. All of my doctors agreed it was the best option since I can not take hormones and most likely would continue to have issues since I will be on Tamoxifen for 5 years. Wishing you well. I hope either way you can get this taken care of soon!