tamoxifen and uterine fibroids

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christina0001
christina0001 Member Posts: 1,491
edited June 2020 in Hormonal Therapy - Before, During, and After

Has anyone else had to deal with this? I've been on tamoxifen for just under a year, and this month learned that I now have a cantaloupe-size fibroid growing out of the back wall of my uterus.

It is not causing me any discomfort whatsoever. I am scheduled for DIEP reconstruction next week. My gynocologist said that after I am completely healed from that, I need to have a hysterectomy. I'm disappointed and scared that I have to have another surgery.

I don't want to dissuade anyone from taking tamoxifen; I'm grateful that it helps to keep the cancer away. But I wondered if anyone else had been through this, and what to expect from the hysterectomy.

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  • JeanGenie
    JeanGenie Member Posts: 28
    edited August 2013

    Hi Christina!  I just got the SAME news on Tuesday . . . .

    I have been on Tamoxifen since December 2011.  My gyno found fibroids in my ultrasound in July of 2012.  I got my period back in January this year and they were much heavier than before BC.  At the beginning of July, I started spotting which turned into bleeding that hasn't stopped.  I saw my gyno Tuesday and she said that the Tamoxifen is acting as fuel to my fibroids and neverending period.  She said we could do a D&C but she felt like we would be back in the same spot within a year and that she recommended a hysterectomy. 

    Like you, I am so upset that now here comes another surgery.  I'm not upset that I chose to take (and keep taking) Tamoxifen.  I know that these kinds of problems are relatively rare but I was just getting to the place where I was really moving on from my cancer experience (I was having whole days where I never even thought about it!) and now this.

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  • christina0001
    christina0001 Member Posts: 1,491
    edited August 2013

    Thanks for responding, Jean. It is comforting that I am not alone in this situation.

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  • magnolia57
    magnolia57 Member Posts: 28
    edited August 2013

    Hi Ladies,

    I too just found out last week that I have a uterine fibroid that is also pushing out into the abdominal cavity- how lovely... I too am not happy about more stuff I have to deal with to be "fixed" enough to move on with my life. People who have had fibroids removed with laparoscopic surgery or the new procedure which essentialy cauterizes the blood source and starves the tissue (something like that) say that it is any easy in and out. They were not given the recommendation to have a hysterectomy. I think I'll have my fibroids removed. Interestingly, No connection was made to my use of arimidex and the fibroids. The onco acted like it was a coincidence and unrelated. Now I'm not sure what to think about that. I'd love to hear from others who have this situation, too. Thanks!







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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2013

    Hi,

    I had terrible fibroid problems for years before bc. The procedure magnolia mentioned is called a uterine artery embolization and it is done by interventional radiologists. I had this procedure years ago. It is done under conscious sedation with just a tiny incision in the groin (no stitches). Very easy with only minor cramping that is easily controlled. This was a good solution for me and saw me through to menopause when the drop in estrogen made fibroids history. I don't know if Tamoxifen makes the situation different, but it's a great procedure if you want to void hysterectomy.

    Caryn

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  • christina0001
    christina0001 Member Posts: 1,491
    edited September 2013

    Now that I am through reconstructive surgery I am able to focus more on this issue. I am really tired of surgeries! Being that I have no symptoms/discomfort from the fibroid, I think I will see my gyn again after the holidays, rediscuss the issue, and also ask her to recommend someone for a second opinion. I would like to avoid this if at all possible. Also my gyn does not do DiVinci hysterectomies and if I do need one, I want to be sure I am choosing the best surgical option so I can recover fast.

    I am so sick of having to think about medical/health things!

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  • christina0001
    christina0001 Member Posts: 1,491
    edited September 2013

    Question: does anyone know, if I stop taking tamoxifen, will the uterine fibroid shrink or at least stop growing?

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  • calidancer
    calidancer Member Posts: 88
    edited May 2016

    Curious if you stopped and the fibroid shrunk? I am facing a hysterectomy or at least a myomectomy and have discontinued Tamoxifen (which was for prevention on my healthy side) in hopes that my pineapple sized myoma shrinks to a more manageable size.

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  • sm627
    sm627 Member Posts: 298
    edited July 2019

    Hi Ladies,

    I know this post is several years old so I am not expecting to get a reply soon. I was wondering if any of you have had success with Uterine artery embolization for your fibroids and have been able keep on taking Tamoxifen? I have 3 fibroids and they weren't to bad when I first started taking T almost 2 years ago. But now they are causing me so much discomfort and pain it is so annoying and pain killers don't seem to help all that much. I would love to not feel like I have PMS everyday. :-(

    Thank you for sharing your stories it helps so much.

    Hugs,

    Sara

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  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2020

    Sarah. I'll find out after July 15. Will have uterine embolization. With my profile and inability to take AIs despite being in menopause I need to stay on it and will. Did you do it?

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