Late 40s, done w/ Tamoxifen, getting period again and worried

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kika2013
kika2013 Member Posts: 101
edited April 2019 in Middle Age 40-60(ish) Years Old With Breast Cancer

I'm about 5.5 years out from diagnosis and recently finished Tamoxifen (about 6 months early with my onc's blessing). After a few months of random periods/light periods, I now seem to be back on my old schedule of every 28/29 days, very mild PMS symptoms (some cramping, painful breasts), normal periods. It's making me very nervous as I think about those hormones washing through my breasts, especially, as my cancer was very hormone positive (ER and PR). I'm 47 now, diagnosed at 42. I was released by my onc to survivorship in the summer, but haven't seen anyone there yet and am just wondering if anyone can speak to this issue. After 5 years of trying to prevent hormones, it feels sort of terrifying to be so aware of them again and to wonder what they might be encouraging to grow. Part of the reason my onc said it was okay to stop Tamoxifen a bit early was because she thought I was hitting perimenopause (also, it was making me insane...!). That doesn't seem to be the case. I had a very small tumor, oncotype 5, no genetic component or family history. I feel like in some ways my very fortunate diagnosis has made doctors just assume all's fine.


Thanks for all experience/advice.

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  • Palesa2018
    Palesa2018 Member Posts: 140
    edited November 2018

    Hello Kika2013, it sounds like you are not yet in menopause. Have you considered ovarian suppression? That will limit the hormones coursing through your body then you and your MO can discuss further need for tamoxifen. Just my view.

    All the best.

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited November 2018

    My onc recommended that I stay on Tamoxifen for 10 years. I'm 4 years out and now I'm on Arimidex instead since I'm post-menopausal. My understanding is that the newer guidelines for Tamoxifen is 10 years. My onc won't let me go until I am 10'years out. You may want to have a conversation withy

    Your onc about staying on Tamoxifen, especially if you tolerated it well

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  • Falconer
    Falconer Member Posts: 1,192
    edited November 2018

    Kika,

    Sorry. I understand your fears 100%.

    Has anyone recommended the BCI? It's an indexing test to determine if additional hormone therapy would be beneficial. It can give peace of mind to show that you're in more of the clear than your hormones might suggest.

    Good luck to you. You're not alone.

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  • Allenan
    Allenan Member Posts: 111
    edited April 2019

    I have been on Tamoxifen for almost 7 years now. Onc says I need to be on it fir 10 years two.

    Having a scare now because my period just came with a vengeance after being non existent for about 11 months. I am 54. I thought i was done with periods. Last TV US showed endo thickening of 9mm. GYN says I need Biopsy. I had one in 2016 for same reason. I just did not have a monster period like this. The last one lasted 1.5 days and was in April 2018. I am worried now. Anyone with similar experience?

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  • Palesa2018
    Palesa2018 Member Posts: 140
    edited April 2019

    Hi Allenan, sorry to hear that. I hope it is nothing to worry about. Let us know how you go.

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited April 2019

    Allenen i just went through this. No period for 4 years and then Bam! Period from hell. TV US showed endometrium at 15mm. Biopsy was totally negative, and I haven't bleed since. My MO called it breakthrough bleeding...My OB/GYN said to expect it from tamoxifen.

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  • Allenan
    Allenan Member Posts: 111
    edited April 2019

    Tresjoli....Thanks for your post. I am on my way to my GYN now as endometrial lining went from .9mm to 21mm in one year. I am having the Endo Biopsy this morning. I always have a yearly TV ultrasound. I am nevous but your post help to quench my anxiety. Will keep posting update.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2019

    With an Oncotype of 5 I’d think twice about doing anything as disruptive as instant menopause. I did an oooph at 55 and it was rough even then. If your period gets to be unmanageable you could consider a hysterectomy which also takes tamoxifen initiated endo cancer off the table. I’m seven years out, Oncotype of 3, I did four years of endocrine therapy and never looked back. What will be will be. Carpe diem.
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  • Allenan
    Allenan Member Posts: 111
    edited April 2019

    Had my biopsy today. Now the waiting game begins. I get the results in a 7 to 10 days. Also did a blood test to see my FSH and estradiol levels to see if i am actually in menopause. 2 years ago i was told i was not (via the test results).

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