Bleeding after tamoxifen....hysterectomy?

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kimber1
kimber1 Member Posts: 20
edited July 2014 in LCIS (Lobular Carcinoma In Situ)

just in need if some thoughts...

Diagnosed with LCIS in July of 2011 and started Tamoxifen after excision all biopsy. Had regular periods until I started Tamoxifen, then immediately NOTHING....not even spotting until last month...spotting for almost 3 weeks. Nothing heavy but still needed attention. 

Oncologist had me stop Tamoxifen immediately...no more...done. He also highly recommends TAH BSO at this point...due to unusual bleeding plus the need to control/stop estrogen now that I am off Tamoxifen. 

The logic of it makes sense to me...I am willing to go forward if insurance agrees.

OB GYN appt including ultrasound this Thursday. I have a stenotic cervix making in iffice endometrial biopsy extremely painful/difficult...hope that is not required!

Anyone else out there been in this situation?! Sorry so wordy....thanks for any input.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2014

    I have similar symptoms and my OBGYN is watching me closely. Fortunately I had a TVU before tamox so I have a good baseline re: thickening. You could consider a consult with a gynonc. I'm going to do whatever my gyno recommends, but I'm not in any hurry to have more surgery. I keep going back to the increased risk of endo cancer from 1 per thousand to 2 per thousand w T use, and I feel better. I know it doesn't really make sense, but I'm not really that concerned.  Best of luck and let us know how everything goes. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2014

    I would agree with getting another opinion from a gynocological oncologist (they will have more expertise in this area than just a regular gyn or regular oncologist). My oncologist told me while on tamox 25% will continue to have regular periods, 50% will have irregular periods, and 25% will stop altogether. Gyn told me light spotting was very common and to only be concerned if there was abnormal heavy bleeding. Maybe they are recommending it due to the length of time (3 weeks) it has continued? Have they considered removing just the uterus (save the ovaries and avoid immediate surgical menopause, as you are early 40's, right?) and put you on evista due to the LCIS?  I ended up with a TAH/BSO (and immediate surgical menopause, which was rough) due to large ruptured ovarian cysts while on tamox, so I didn't have much choice in the matter, but I do regret not getting a 2nd opinion from a gyn-onc, at least to see what my options were. I was able to continue on tamox for 3.5 years after my surgery, and then switch to evista, which I still take for preventative measures. (I have LCIS and family history of ILC).

    Anne

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  • kimber1
    kimber1 Member Posts: 20
    edited July 2014

    So I had my appointment on Thursday with the OB GYN. Ultrasound was done---showing thickening of uterine lining at 16-18mm which he said definitely warranted an endometrial biopsy which we did. (I hate those!..)    He doesn't really think a hysterectomy is warranted at this time (unless the pathology would come back bad of course). He feels like if the biopsy comes back okay and I don't have anymore problems with abnormal bleeding, that maybe I should be able to go back on the Tamoxifen on a trial basis......OR if my ONC definitely decides he doesn't want me on these meds, that he COULD just take my ovaries rather than the full meal deal. (i don't know...if you're in there anyway...maybe just take it all??)

    anyway, he assures me that after pathology is back, he and my onc will have a discussion about best course of treatment. 

    ...in other news...it's time for another mammo on the 21st of this month.

    LCIS is such a strange thing!

    Kim 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2014

    Kimber---thickening of the uterine lining while on tamoxifen is extremely common, so if your endometrial biopsy comes out negative, hopefully you could continue on tamox and just keep up with the monitoring (TVUS). Removing the ovaries decreases estrogen production, but not completely (estrogen is still produced in the adrenal glands, fat and skin), so you would still need to take either tamoxifen or evista. (because of the risk of invasive bc from the LCIS). so removing the ovaries doesn't take away the need for the preventative meds.  If you need to have the uterus removed, try to keep the ovaries if at all possible. (you can go thru a natural menopause which is much less stressful and avoid a lot of SEs that come with immediate surgical menopause).

    anne

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