Fibroids, Thickening Endometrium, & now Polyps on Tamoxifen

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Curlykat
Curlykat Member Posts: 85
edited November 2018 in Hormonal Therapy - Before, During, and After

After one year on Tamoxifen, my Gyn felt that my uterus seemed enlarged and he could feel some fibroids, so he ordered an ultrasound. It confirmed that since being on the Tamoxifen, I had developed some fibroids, and my endometrial lining was starting to thicken. This year, I had a MRI for a hip injury and apparently it showed some changes in my uterus. My Med Onc commented that it apparently looked "funny" so I asked my Gyn to review it before my annual. Between that, the feeling of (still) uterine enlargement, and an elevated CA125, we decided to do an endometrial biopsy. Pathology indicated uterine polyps.

My Gyn gave me the option of having a D&C to remove the polyps and to continue to watch, or to have a supercervical hysterectomy (uterus only). I don't think either is a wrong choice, but I'm strongly leaning towards the hysterectomy as I've got two more years on Tamoxifen and it seems logical that I'm going to continue to react in the same way. My Gyn no longer does surgery, so I'll have to meet with a new provider within his practice and discuss the options with him before scheduling anything, but my doc felt pretty comfortable that I'd be able to keep the cervix and ovaries.


Has anyone else encountered similar issues on Tamoxifen? If so, what path did you take? Anything that I should consider?

Thanks!

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  • LaughingGull
    LaughingGull Member Posts: 560
    edited July 2018

    Hi CurlyKat,

    Six months before I was diagnosed with BC I had an episode of abnormal bleeding, ultrasound revealed thickening of the uterine lining, a biopsy showed tissue compatible with polyps, but after the bleeding stopped and I got a hysteroscopy, there were no polyps found there. This episode scared the hell out of me.

    Then I was diagnosed with BC, got chemo (and chemopause) and the plan is starting hormone treatment once I am done with radiation in a couple of weeks. I discussed the hormone treatment with an oncology gynecologist, and given this history (among other reasons, such as painful ovulation and periods) he recommended prophylactic oophorectomy (I am 48) and then aromatase inhibitors instead of tamoxifen. So I will get the oophorectomy in a few weeks.

    My best friend also had BC and got uterine enlargement, thickening of the lining plus polyps six months after starting tamoxifen. She had both hysterectomy and oophorectomy at 45, and was also switched to aromatase inhibitors.

    How old are you? Are you close to menopause?

    LaughingGull

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  • Curlykat
    Curlykat Member Posts: 85
    edited July 2018

    LaughingGull,

    Thanks for sharing your experience. I will be 50 this month, but am, unfortunately, nowhere near menopause. We'd hoped that the Tamoxifen would push me that way, but I had a FSH test done in April and it was 9.1, which doesn't even read as premenopausal. If I were closer, I'd consider losing the ovaries and reducing that risk, but I really don't want to deal with the forced menopause.

    Interesting to know that this isn't uncommon.

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited July 2018

    I was no where near menopause, which I should have already been through at the time I was to start an AI. When the dexa scan came back as mild osteopenia in my hips, I decided to take Tamoxifen and get rid of the ovaries, tubes and uterus. Best decision that I ever made. No more worries about CA125, uterine issues, cycles every 24 days. Easy surgery and easy recovery.

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  • Lisey
    Lisey Member Posts: 1,053
    edited July 2018

    Chiming in here...  I'm 43 and no where near menopause... and never had an issue.  But they are saying I have a 'mass' - most likely a fibroid and thickened lining from the 2 years I've been on Tamoxifen.  Looks like I'm getting the ooph and hysterectomy sooner rather than later.  I'm waiting word on the biopsy to decide if it's next week or in a few months... :)

    With that, I'm way concerned about losing all my female parts.  I lost my boobs, and will my vagina prolapse without everything?  What about sex.. am I going to be dried up?  I hate the thought of having to plan for sex.. that just sucks.  

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited July 2018

    I'm sorry you are dealing with this, Lisey. I went through the endometrial biopsy and a rapidly growing fibroid scare in February. Biopsy came back as endometritis and I had a course of antibiotics. (I hate being on those.) Next ultrasound nearly four months later showed little change in the fibroid and my gynaecologist said we will check in a year. I'm in no hurry for another major surgery. When I was discussing the situation with my MO, and bemoaning the decision making about the ovaries, he completely understood and did not encourage an oophorectomy. He's definitely a quality of life guy.

    I have the same questions as you, but I think that outcomes vary and there is no way to predict if everything will be fine or if you'll be one of the ones to struggle. I hope your results are benign.

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  • Lisey
    Lisey Member Posts: 1,053
    edited July 2018

    Biopsy results were negative for cancer... which means Hysterectomy will be this fall rather than next week.  I still think I need to get it out, though I'm young for it - 43 yrs old.   I just can't handle the idea that this fibroid 'may' have cancer and they can't be positive unless it comes out.  I don't want to deal with more cancer scares. 

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  • Lisey
    Lisey Member Posts: 1,053
    edited October 2018

    HI Everyone, so now I have a cyst on my ovary and the fibroid has grown.  They really want me to have this surgery.  Michelle In Cornland... can I ask how old you were when you had it and also if you felt like an old lady now?  

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  • Lisey
    Lisey Member Posts: 1,053
    edited November 2018

    Hi Everyone.  Here to give an update.  I decided on a Hysterectomy but keeping my ovaries.  Oncologist was fully supportive due to all the risks associated with ovary removal before 60.  I got the tubes, cervix and uterus removed though... and I'm 3 days post op and feel fine.  Now I can keep taking my Tamoxifen, which is easy for me to handle, and not be an old lady any time soon...  all the while removing the tamoxifen risk of uterine thickening and every ovarian cancer risk.  (new studies show 70% of ovarian cancer starts in the tubes). 

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