Tamoxifen to oophporectomy to arimidex

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Tinanicu
Tinanicu Member Posts: 103

I'm 43 and just had a total hysterectomy last week. I was on tamoxifen for 1 year with no side effects except uterine hyperplasia, ovarian cyst, and maybe weight gain. I stopped it one week prior to my hyster/oophporectomy as directed by my oncologist. 

  I am to start arimidex 2 weeks post op (next week).  I haven't had any menopausal symptoms since the surgery (many don't get them right away). My question is how do I know if any future symptoms are med related vs surgical menopause? Has anyone had a similar history? 

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  • miso
    miso Member Posts: 14
    edited September 2014


    It is hard to know what is responsible for any unpleasant symptoms you might get. I am now 6 yrs since the ooph and the one "good" thing about surgical menopause is that it may be very intense but it is shorter than natural menopause. The hot flashes I have now are solely due to the Tamoxifen I am taking. They are very different in intensity and frequency compared to the Arimidex. To be honest life was much easier on Arimidex - I am finding Tamoxifen to be almost intolerable. The fatigue is devastating.

  • AryaS
    AryaS Member Posts: 131
    edited September 2014

    I am having my ovaries out this month.  Thanks for sharing your experiences.

    Miso-I experienced tremendous fatigue on Tamoxifen too.  Is there any way you could switch back to arimidex or something else?

  • Tinanicu
    Tinanicu Member Posts: 103
    edited September 2014

    hmm. I had hardly any symptoms on tamoxifen. I wonder how the AI will play out. I have lost 5 lbs in one week since the surgery and being off the tamoxifen

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited September 2014

    Tinanicu - this is only my experience, so take it for what you will.  I had my ooph at 44, no premenopause symptoms prior to that at all.  My MO started me on an AI almost immediately.  AIs turned out to be a nightmare for me.  My new MO thinks it was too much change for my body all at once.  If I could do it over again (especially if I already knew I could tolerate Tamoxifen), I would give my body time to adjust first before starting a new med.  Good luck!  Is tamoxifen off the table for you because of the uterine issues and cyst?

  • Tinanicu
    Tinanicu Member Posts: 103
    edited September 2014

    no, I am brca positive and do not want to risk another cancer... Especially one that is caught late. That is why I got the whole thing removed. I am changing to the AI because I will be post menopausal 

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited September 2014

    I am BRCA + as well.  But had an ooph, kept my uterus, as research at the time thought this was fine.    Now new research says BRCA1+ women are more likely to get aggressive uterine cancers.   Thus, I, too, have recently stopped the tamoxifen.  Can't seem to catch a break in this whole mess.  

  • Tinanicu
    Tinanicu Member Posts: 103
    edited September 2014

    yep  I feel ya. I had uterine hyperplasia and polyps before starting tamoxifen so I was nervous before starting. 2 uterine biopsies and 1 cyst later...not taking any more chances

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited September 2014

    I don't blame you.  My MO actually didn't believe me about the new research.  I was so angry that day, I copied it off, and drove to the office a half hour away to drop it off.  Gave the nurse the riot act and told her I wanted my MO to read it before my appointment next week.  I know I am my own best advocate, but I am tired of being my only advocate.  So many doctors do not understand BRCA at all.

  • Tinanicu
    Tinanicu Member Posts: 103
    edited September 2014

    Good for you. That really sucks about your MO. That's their job!

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