Tamoxifen and Periods

Hey,

Wondering how many of you continued to get your period after starting Tamoxifen? I have been on Tamox for 7 months now and have had 5 periods. They have changed a bit (much heavier flow on first day, tapering off very rapidly on second and third days, and more clots) but they are definitely still periods. No spotting or bleeding in between, not even during the 2 months that I didn't get a period. My nurse practitioner seemed surprised that I am still having periods.

Because I have PCOS, I managed to get a referral to a gynecologist who will be monitoring me while I am on Tamoxifen. (Side rant: It really, really annoys me that pelvic ultrasounds are not automatically prescribed in Alberta for premenopausal women on Tamoxifen when endometrial cancer is one of the well-recognized potential side effects of this drug.) My gynecologist did a baseline ultrasound this month - revealed the two small fibroids that were there before breast cancer and an 8mm endometrial lining (utlrasound was performed one week after a period). My gynecologist told me that it will be very, very obvious if my bleeding becomes abnormal; I was worried because I have missed 2 periods and so didn't know if I would necessarily recognize potential symptoms of endometrial cancer. Despite everything apparently being a-okay, however, she seems to think I am ultimately headed for a hysterectomy as she spent a long time talking about my options.

Interested in your experiences!

DanceSmartly

PS: When I first went to see my gynecologist, she quoted the statistics for endometrial cancer arising from Tamoxifen to me and then said,"But I fully recognize that being diagnosed with breast cancer at 42 with zero family history means that you have already been on the wrong side of the statistics once, so we are just going to follow up on this thing properly!" I was pleasantly surprised by that!

Comments

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2018

    My story is very different from yours for many reasons - I'm older and was closer to menopause age when diagnosed, periods stopped due to chemo, no baseline US was done - even though I requested it from MO and GYN.

    However - I had pain a couple of months after stopping Tamoxifen and was sent for an US which showed a thickened uterine lining and an ovarian cyst. Follow up US three months later showed worsening of both. A D&C was planned and then I got a period - 18 months after the last one!

    The US months after that was normal - with no Tamoxifen and no further periods. I do believe that women on Tamoxifen should minimally receive a baseline scan.

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

    I was 43 when I started tamoxifen and it regulated my periods such that they are much more like I had when I was younger, slightly longer cycle 29-31 days, but day 2 brings very heavy flow.

    Lots of issues showed up on the TVUS. Thickened lining (biopsy showed endometritis) rapidly growing fibroids (seemed to stall) and ovarian cysts on the last one. Was supposed to have another US on Saturday. I postponed it until the New Year. I've had five tough Christmases and want to be able pretend all is good this year!


    Trying to get some cheap genetic testing through Color Genomics before making surgical decisions. Tough to do from Canada when you've failed the saliva test twice and now need a blood draw. Been working on this project for over a year now.
  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2018

    Been on tamoxifen since spring of 2017. My periods have been about 6 weeks apart until this last time when it was 8 weeks. Not sure when the next one will be, if they are about to be further and further apart as time goes on. Had a baseline ultrasound last year with a normal endometrial lining (2 weeks after period). I see gyn tomorrow so will see when she wants to do the next one. I guess 2 weeks after whenever it shows up again...

    When I saw MO this summer she said my period could still go away. We will see.


  • GardenGirl11
    GardenGirl11 Member Posts: 26
    edited November 2018

    Hi. I’m 43 and have been on Tamoxifen for around 8 months, I think. Because it makes me foggy, unless I mark it in my calendar, I can’t always remember, lol. My periods were regular but have started to change the past two months. The prior month I was 5 days late and this month 2 weeks late. The duration and intensity of my periods have also changed. I used to have a heavy 3 day period with some lighter days but now just one heavy day and then some spotting for a couple more. I wish they’d go away altogether but at the same time it somehow makes me still feel feminine. I was getting an US every 6 to monitor cysts but at my last one they decide to stop. That didn’t sit well with me...mainly because I had started taking the Tamoxifen and worry about endometrial cancer. If my period stops I'll go back to my gyno and get checked out

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