Anyone perimenopausal, on tamoxifen?

kim2005
kim2005 Member Posts: 49
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I am 43 and it's been three years since mastectomy.  I've been on tamoxifen and I go to a lab to have blood drawn once per year to have estradiol checked.  The last count was super high (over 700 and normal for perimenopause is under 250).  My oncologist says not to worry, that tamoxifen should block the estrogen.  I am kind of freaking out because of two things.  One, is that research a few months ago that tamoxifen may not be effective for us ILC gals (he has not heard of the study but said that they didn't have enough information yet to tell women to stop taking tamoxifen and no alternative) and TWO, I've heard that tamoxifen can actually INCREASE your estradiol numbers.

 My OB/GYN said that since I'm doing so many positive things (exercise, CoQ10, EPA/DHA, melatonin, and much more) that the tamoxifen should protect me.  Last year there was a show on ABC News that said those with high estrogen can have more recurrence.

 Have any of you  experienced this?  I feel so alone.  I've spoken with 5 doctors and get different stories/recommendations from all.  Feeling frustrated.....

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  • cp418
    cp418 Member Posts: 7,079
    edited January 2009

    Has anyone discussed Lupron shots to chemically shut down your ovaries? When I was dx my onc wanted to give me Lupron shots plus Tamox as I was perimenopause age 49.  I took Tamox for 4 months and then had oophorectomy to switch to AI.  I was very strong ER+, PR+ and omy nc would not measure my hormone levels.  Since I felt I wasn't being monitored I did the ooph. Sometimes to get a straight answer from these doctors you have to ask them what would they tell their wife, sister, mother, etc to do?

    Note: I want to add that since being on an AI plus the ooph I now have osteopenia after 20 months. Yes, I take tons of Calcium/Mg/Vit D supplements and this is the price we patients pay. 

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  • Kleenex
    Kleenex Member Posts: 764
    edited January 2009

    Well, I don't think I can be of help to you, but you have given me some questions to ask my onc as I begin my five years of Tamoxifen. I am older than you - 45 - and have been taking Taxoxifen for almost 2 months with no sign of my period disappearing so far. There has been no mention of testing my estrogen levels, but I can't help but think that they're still up there. I hate that there's not a lot of good information out there about breast cancer in general, but ILC specifically. The reports that Tamoxifen might not be helpful to those of us with the ILC diagnosis are worrisome - it's got some annoying side effects and possible complications if it is NOT actually helping me out here. It's not so bad if it IS doing me some protective good.

    I am interested in replies that you get - and if my onc says anything useful, I'll let you know. I see them in a couple of weeks.

    Coleen

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  • kim2005
    kim2005 Member Posts: 49
    edited January 2009

    Thank you Coleen and cp for your replies.....cp, how was the surgery and how have any side effects been?  Was instant menopause brutal?  I am really thinking that maybe I need to consider this to severely reduce my estradiol.  My oncologist doesn't even look at the estrogen counts and it was only upon my insistence that I learned how high it is. 

    Coleen, for the most part tamoxifen has not given me a problem but with this recent information that over time tamoxifen may raise estrogen numbers AND that some people develop tamoxifen resistence, it's making me think maybe I should push for menopause and get on the AI's (like you said cp, with their own inherent issues as well)....ugh! 

     I was 43 when Dx and am now 46 so I've been on tamoxifen 3 years and it could easily be another 4 years before I naturally go into menopause.  I'm really concerned about the possiblitity of recurrence if estrogen remains that high.

     Thanks for your responses!

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  • cp418
    cp418 Member Posts: 7,079
    edited January 2009

    kim - I want to clarify I had IDC with one positive sentinode.  I replied because of your question about Tamox and perimenopause.

    Background - I always had horrible periods. When I got my path report as 100% receptor postiive I felt I had extreme hormones and still getting regular periods at age 49.  I even had 2 periods during chemo before I stopped - - - what is referred to as chemopause.  My onc didn't think periods would return but wanted to start me on Tamox and Lupron without doing any hormone levels.  I wasn't satistified with this missing information given my receptor status.  So I started the Tamox waiting for my ooph surgery to be scheduled.  I think because the chemo crashed me into early menopause I went through much of the side effect during chemo.  The short time on Tamox I had very bad insomnia, depression, night sweats and hot flashes.  So I don't know if this was still the chemo crash or the Tamox.

    The ooph procedure was laproscoptic and very easy same day surgery.  I walked out with 3 band-aides on my stomach.  Initial discomfort after surgery was due to the gas they use to inflate the abdominal cavity for exploratory.  It wears off and I had no other issues - - - for me very easy compared to wisdom teeth extraction!!!  I was driving by the 2nd day but no heavy lifting for several weeks.  If you search maybe under the Hormone forum you might find more posts about this topic.  Quite a few ladies here have had ooph procedure.  Some like me who made the decision themselves and others because their doctor recommended.  This seems to be another gray area where some doctors say yes and others that the procedure is too aggressive treatment.  I guess it helped me to better sleep at night knowing I went after an enemy.

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  • kim2005
    kim2005 Member Posts: 49
    edited January 2009

    Thank you for the information cp.  I am weighing the possibility of ooph HOWEVER have just read about this study from last year touting the benefits of suppressing the ovaries with goserlin AND using the drug Zometa to reduce recurrence.  The studies showed a 37% chance of reduction and it sounds VERY encouraging for pre-menopausal women (perhaps the study will extrapolate to postmenopausal later).

     I am curious what my oncologist will say abou this or IF he knows about the study. 

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  • Annabella58
    Annabella58 Member Posts: 2,466
    edited January 2009

    hi there, just my two cents....I had one bc w/lumpectomy and rads, stage 1, very tiny but multiple.  Highly estrogen ++++.  Then went on tamoxifen, and i had regular periods all thruout it!!!!  One year off tamoxifen, and bang!  cancer again, in the same girl, this time I had mtxmy, recon, chemo and am on an AI.  I am currently on lupron shots and have been for 8 months.  I definitely went thru any SEs for menopause whilst on tamoxifen, but did not actually get menopause, just the night sweats, moodies, etc.  I felt great, lost weight, and did fine on it otherwise.

    My GP doesn't want me to stay on lupron.....it's not that bad for me in terms of feeling lousy, but it is giving me high cholesterol (240) and also HPB...now this could be due to the arimidex as well.  Long story short, I am taking out the plumbing (my choice) but given my long exposure to tamoxifen and history of multiple cysts on the ovaries and my sky high estrogen levels (I had break thru bleeding even with lupron)!!!! they said good idea.

    I think getting rid of anything when you have such high estrogen limits is a good idea.  When I recover from the hst/ooph (I am 53, so it's not a big deal for me, I had one daughter, and she's 20)

    I shall get myself to the PS pronto and get a prophy on the other girl.  1. I will match, which as of now is just ridiculous, a large B/small C on recon lady and a DD droopy dawg on the right.  and 2.  I just had my MRI and mammo.........I NEVER want this again in this body in this lifetime.  I know it's drastic, but dammit, enough.  I'll trade bone drugs and achies anyday over chemo.

    cp418, I am so on your page........I am taking cancer OUT as in kicking it's butt.  I'm so done with this. 

    Perhaps it's not for everyone, but it is for me, and I won't look back.  Thanks so much for the good info on the hyst/ooph, I may not be able to get lap procedure as my daughter was CS, and if they can't it'll be like another one of those.  I don't care, I want this junk out of my body.

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  • marshakb
    marshakb Member Posts: 1,664
    edited January 2009

    I was perimenapausal when dx'd.   Monthly periods but one month heavy next month light.  After my first chemo tx I never had a period again.  Doc put me on tamoxifen saying the period could come back.  Almost 2 years to the day of my original dx I was dx'd with mets.  Sooooooo I guess I should have been on an AI from the start.  Tamoxifen totally failed me.  I don't know if it is because I was permenantly thrown into menapause by the chemo, or the ILC didn't respond or my body just didn't process the tamoxifen properly.  There is a test to determine if the tmoxifen is working.  Not sure what it is called.  NASH do you know?? 

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  • nash
    nash Member Posts: 2,600
    edited January 2009

    Marsha, it's a genetic test called the Tamoxifen 2D6 test. It tests for the CYP2D6 gene.  More info here:

    http://www.healthanddna.com/drug-safety-dna-testing/tamoxifen.html

     My browser won't past live links--sorry. Just cut and paste. Smile

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  • maryfan
    maryfan Member Posts: 16
    edited January 2009

    hi/ Oooph surgery was fine. Meno not such fun but doable. I feel much safer now !

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  • priz47
    priz47 Member Posts: 470
    edited January 2009

    Hi! I am 47 and perimenpusal. I had a unilat with TRAM reconstruction in July and finished chemo in Dec. I started tamoxifen Jan1st. My onc wants me on tamox for 'a bit' so I can learn what menopause is like. I will probably have my ovaries out next year. I had periods al thru chemo, but none since. I have heard SE of AI are much worse than tamoxifen, so i am OK abt staying on it for awhile. I have insomnia, hot flashes and night sweats. Onc gave me script for Effexor but I am not thrilled with that/ I thinkwe all need to do wht we feel comfortable with.

    D

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  • cjh
    cjh Member Posts: 78
    edited February 2009

    I just got my lab results back from Mayo Clinic yesterday as my doctor is recommending tamoxifen after chem, I am peri menopausal. At the bottom of the  lab report was a note regarding CYP2D6  which basically said I have two copies of the gene that inactivates enzymes and produces a poor tamoxifen response. It also stated that post menopausal women with this gene are at increased risk of breast cancer reoccurance when treated with tamoxifen.

     I am so glad my doc ran this test as I looked up all the other drugs I do not metabolize due to this gene and found the list of drugs ...most have either made me sick or depressed, effexor was # 1 on the list. I was not crazy, just have a "morphed" gene! Since nearly a quarter of all prescription drugs depend on this enzyme to work, many hospitals and clinics are posting the list.  I would hope testing for CYP2D6  will eventually become required by insurance companies as they realize how much money goes for drugs that not only do not work but can have toxic effects on those that do not metabolize them.

    Interesting stuff, this genomic world...

     CJ

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  • kim2005
    kim2005 Member Posts: 49
    edited February 2009

    CJ,

    I just read about this test and want to have it done.  Isn't this the one that tells you if tamoxifen WONT work on you?  If that's the case and you are perimenopausal, what option does the oncologist suggest?  Will you go for an oopherectomy so you can use Femara?  I have so much to learn.  I also just read about using Zometa AND Goserelin which basically shuts down the ovaries.  Wondering what course you'll take.

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  • wallycat
    wallycat Member Posts: 3,227
    edited March 2009

    Marsha,

    I am curious what grade your ILC was.

     I am a grade 2.  I am hating tamoxifen but nervous about not taking it with no chemo. My onco score was a 20.  As you see, I am totally in the gray area. 

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