Tamoxifen, heavy periods, considering Hysterectomy at 39

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RRB1977
RRB1977 Member Posts: 4
edited October 2016 in Managing Side Effects of Breast Cancer and Its Treatment

Hello.. I have always come to this site to search and read what others have gone thru.. very helpful and figured I would jump into the fray as well..

I was diagnosed with DCIS at 34. Had no family history of BC, ended up having a lumpectomy and radiation. Only did Tamoxifen for a short period of time, and stopped it as I was traveling long distance for work and my Onc was concerned about blood clots.

Last year I started back on tamoxifen and since January my periods have gone haywire. I wake up in the middle of the night to a murder scene.. its insane and completely out of the ordinary for me. I have had a biopsy (all normal), saline ultrasound uterine scan (also normal) so no polyps just the ol' thickening of the lining that comes from Tamoxifen. Since I am ER / PG + I had a Mirena IUD taken out when I was diagnosed.. but now my new set of doctors are recommending that as an alternative for the heavy periods... it seems counter intuitive to me so I am left with a hysterectomy at 39 as my only option.

I am not crazy about having surgery again, but I am kinda tired of the heavy flow and wondering how much worse it can get with time.. I dont need the thing anymore, all done with kids etc, so maybe this is it?

I wanted to see if there were others out there that shared a similar experience. Anyone? bueller?


Thanks!

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  • KateB79
    KateB79 Member Posts: 747
    edited September 2016

    Hi there.

    You could try ovarian suppression as another way to make your decision. I was given the choice of ovarian suppression (I do monthly Zoladex injections), ooph, or nada. I went with ovarian suppression until I decide on the ooph. I'm getting there. The shots aren't fun, but they'll show you--in a way you can reverse if you can't tolerate it--what life is like in menopause before you go with surgery. Hope that helps!

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  • whitedove
    whitedove Member Posts: 292
    edited October 2016

    Hi All:

    I am post BMX on year 6 of Tamoxifen.

    Can anyone lead me towards any info re: Tamoxifen causing excess cell growth on the lining of the uterus? My uterus was biopsied and found to have "dangerous" growth in the lining. Apparently Tamoxifen causes the lining of the uterus to thicken, hence very heavy bleeding during periods...

    My Gyn is going to speak with my Oncologist - She suggest that I go off of Tamoxifen and will be getting a Mirena IUD. Supposedly in 3 months, we will do another biopsy. If my lining is still dangerously thick ie. pre-cancerous cell risk, I will need to get a hysterectomy with removal of tubes and ovaries.

    UGH! Just when I thought I was in the clear -- The Gyn did emphasize, however, that it is not certain that the precancerous cell growth/ risk may NOT be directly caused by the Tamoxifen.

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    • Tresjoli2
      Tresjoli2 Member Posts: 868
      edited October 2016

      i do ovarian suppression. I use lupron. 1 shot every three months. No periods. It's the only good thing that came out of my cancer.

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    • Lvbugs
      Lvbugs Member Posts: 64
      edited October 2016

      I am 46, did hysterectomy after having several large fibroids, heavy periods and a lot of pain. I feel great now and it's because of me keeping 1 ovary. However, I am now getting a cyst on that one ovary and may need that removed to. So I am scared of the surgical menapause that will come if that one goes. I am high ER/PR+ so maybe it would be better anyway. Such mixed feelings.

      Good luck

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    • RRB1977
      RRB1977 Member Posts: 4
      edited October 2016

      I decided to go ahead and schedule the hysterectomy. They will leave my ovaries, etc. At this point I am not jazzed about doing anything else hormonal that may cause more issues so this leads me to this decision... let's see how it goes!

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    • Bagsharon
      Bagsharon Member Posts: 200
      edited October 2016

      RRB1977, were you given the option of an endometrial ablation?

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    • RRB1977
      RRB1977 Member Posts: 4
      edited October 2016

      I was told that it wasn't an option, as an ablation may "hide" later on potential issues with the endometrial tissue...

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    • Carlsoda
      Carlsoda Member Posts: 249
      edited October 2016

      I will just jump in, I had an ablation in my early 40's, diagnosed with IDC at 51. Because of my ablation many years ago they need to watch me careful since I have not had any periods since I had my ablation. They are concerned that serious symptoms will be masked as RRB1977 mentioned.

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    • RRB1977
      RRB1977 Member Posts: 4
      edited October 2016

      It seems pretty extreme to me to go thru with removing the uterus so young.. but on the other hand, I don't want to deal with more hormone treatments, or increase my risks... It seems nowadays its less complex, with the robotic assisted surgery etc.. so it may not be as bad...

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    • Bagsharon
      Bagsharon Member Posts: 200
      edited October 2016

      I had an ablation for heavy periods when I was 37 which is why I brought it up. Even though I don't have traditional periods, I still have menstrual cycles. I was told that chemo will most likely make me post-menopausal because of my age (52) but absolutely nothing about the ablation hiding other issues. I'm sorry you have to go through this and make these kind of decisions.

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