Estrogen levels tested?

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Footsox6
Footsox6 Member Posts: 102

I am taking Femara. (ER+).  Been taking Femara for 2 1/2 years now.  I had complete hysterectomy - now no ovaries, uterus, etc.  I believe that most of our estrogen is produced by our ovaries.  What I am trying to figure out is, if they are prescribing estrogen supressing drugs for us ER+ women, Then why don't they check our estrogen levels?  I would think they should monitor our estrogen levels.  And I would think this can be done by drawing our blood and checking the estrogen levels in our blood.  Does anyone have any information about this?  I am thinking that because I have no ovaries now, that I could possibly take less Femara and then have less side effects from the Femara.  I don't understand why this isn't done.  Has anyone had their estrogen levels checked?  It seems to me I am missing something here.  Can anyone explain this or tell me why they don't monitor our estrogen levels?  Thanks for any info.

 Yolanda

Comments

  • mawhinney
    mawhinney Member Posts: 1,377
    edited April 2010

    Ovaries are not the only source of estrogen. Other "things" in our body combine to form estrogen.  Femara, Arimidex, & Aromasin are amortase inhibitors. AI work to prevent our bodies from creating estrogen while drugs like Tamoxifen attempt to prevent our body from using estrogen.

    Go to the top of the page to Treatments and Side Effects. Then click on Hormonal Therapy to read about HRT.

    I'm not sure what tests you are referring to.  Some doctors do tumor marker tests but other doctors state those tests are unreliable.  In 2 yers of treatment I have never had any tests to find my estrogen level.

  • DFC1994
    DFC1994 Member Posts: 163
    edited April 2010

    I had my estrogen level checked by a blood draw back the end of Nov.I developed a deep vein clot after my mx and could not take tamoxifen so the ONC checked my estrogen levels and although I only had one ovary remaining decided to take it out because that one ovary was producing way above normal and my cancer was highly ER and PR+.I take no anticancer pills at all.

  • Katalin
    Katalin Member Posts: 230
    edited April 2010

    This whole estrogen thing is very strange to me.  I know it's complicated, but I too have a lot of questions that the oncologist I'm seeing right now can't take the time to explain to me.  I got the bright idea when I was going off tamoxifen, which I tolerated OK I guess, to test my estrogen levels, while on tamoxifen, and while on Arimidex.  I know tamoxifen doesn't reduce your estrogen levels, it just prevents it from binding to cells (I think!).  Then I found Arimidex untolerable, so I went on my naturopath's protocol of healthy eating, Indole 3 Carbinole, a few other things...and I had another test.  Then I went on a trip for a month with a friend and behaved badly:  bad sleep, staying up all night, immoderate drinking, dancing,  in general, behaved like a teenager when the parents leave town.  For a month.  Came home, had another estrogen test.  All these tests were done reluctantly by my oncologist.  When I finally went in for my next six month appt. with the oncologist, guess what?  THEY WERE ALL THE SAME.  And they were all low.  

    When I asked her to explain, she said she didn't have time to explain the mechanism and role of estrogen in breast cancer.  Okay.  So six months later, when she was pushing me to take arimidex again, I asked her to explain this no change thing again.  She told me that the tests are not reliable because, and here, imagine someone making a fist then flashing their fingers out then making a fist again, over and over again, she said, estrogen levels change from moment to moment.  Well, maybe during the period of a month, maybe when your pre-menopausal.  But I wasn't quick enough to ask her at that point, but yes, what about POST-menopausal?  My tests show that I was consistently low.  On any protocal.  It's VERY confusing.  I would take the freakin' meds if I thought it made a difference, but for me, it doesn't.  Why feel like a 80 yr. old with arthritis when I am 52 and have a physical job I love.  Having cancer took a lot away from me...I'm not sure I want to spend the rest of my life hobbled up, for a theory! What OTHER thousands of things can contribute to the growth of tumours?  Frankly, they don't know.  Why do they never talk about the role of progesterin?  I find it all bizarre.  I hope someone can come along and explain!  To that end, I'm looking for a new oncologist in the hopes of better understanding.

    Til then, I remain meds free...and feeling a bit like I have a life, while I'm living... 

  • livingunderthebird
    livingunderthebird Member Posts: 4
    edited May 2010

    Katalin, you have just about said what i am thinking.  I am currently on Femara, and have gotten the same bloody runaround from the hematologist.  I intend to revisit the question in July. i figure if i am one of the 'lucky ones' whose SEs subside, i'll think about continuing it then.  If i'm still cripping around like a VERY old lady, i'm coming off this crap.   Are we REALLY so few in number?  I am seeing more and more posts, but are we 'problem children' the only ones posting? 

  • rreynolds1
    rreynolds1 Member Posts: 450
    edited May 2010

    Hi All,

    I asked my oncologist about testing my estrogen levels and she said they don't do that.  ???? How do they know the Arimidex is doing the job?  So I read, "What Your Doctor May Not Tell You About Breast Cancer" and decided to take the matter into my own hands.  It seems that it is the domance of estrogen which is the problem so I started using progesterone creme.  I feel sooo much better.  Please don't do this without doing your homework.  I spent several months researching the issue before making my decision.  Good luck.

    Roseann

  • Kathy044
    Kathy044 Member Posts: 433
    edited May 2010

    I think the problem with the blood tests is that it tells you how much estrogen is being carried in the bloodstream, but doesn't show if estrogen is being produced and used within the breast tissue.

  • chapstickmom
    chapstickmom Member Posts: 21
    edited May 2010

    I was told that after menopause , fat , breast tissue and skin still make estrogen . The recommendation is to stop alcohol ( promotes estrogen) , and get body fat down to 24 % or below.

    I have been seeing an oncology dietician and have my body fat down from 40% to 33 but still have 15 pounds to go to hopefully get to 24 %.

    also avoid red meat ( estorgenn+ receptors??), exercise 3 hours a week ( decreases estrogen not sure how !)

    avoid cosmetics with parabens (cheap nail polish ,some moisturizers.)

    there is a lecture on this from dr. Tilobarsky on the komen.org site. 

    I also switched to non-fat dairy. Stonyfield non-fat yogurt and Natural by Nature grass fed skim milk are both yummy ! :-) ( I guess animals store estrogen in the fat so you need to avoid the animal fat.)

    Also get your vitamin  D checked and get it up to 60 with supplements if necessary. (mine was only 17 !!) (significant data that low Vitamin D levels promote cancer)

    Also suggested to me to take a baby aspirin a day as there is some research that it prevents recurrence.

    I have done all the above but haven't taken the anti-estorgen medicine as I can't bear the thought of it ! 

  • sue50
    sue50 Member Posts: 61
    edited August 2010

    Many estrogen tests were originally developed for the infertility market, to test for dangerously high 17B-estradiol levels associated with infertility treatments. When I went through infertility treatment I was tested Daily. The diagnostics industry was eager to create tests for that kind of $$. 

     This type of assay may not be sensitive enough for ladies in our position with below normal estrogen levels.  Your doctor may need to send the sample to a special reference lab to obtain a reliable reading, (if there is an approved test?).  This may be why the doctors are hesitant to test you.

    I just read an article that there is a similar problem with testosterone testing: the assays out there can test normal men reliably but are not sensitive enough to test women who may be receiving testosterone therapy at low levels.

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited August 2010

    I recently had a 24 hour urine estrogen test performed and also a saliva test, since my onc doesn't believe that AI's won't work on some people. I have not yet taken Arimidex and I wanted a baseline before I take it (if I take it, which is doubtful). Interestingly, my DIM and Grape Seed extract and diet appear to be working as my estrone and estradiol are undetectable. I am working with Dr Joe Veltmann to monitor the levels and also to ensure that based on my genetic profile, I am taking the proper supplements as well as eating the proper foods to maximize estriol metabolization (is that even a word?) and to keep the bad estrogen metabolites down.

    I feel really good about testing for estrogen via the 24 Hr and saliva also. From what I read, blood is not very accurate.

  • jules67
    jules67 Member Posts: 7
    edited September 2017

    Katalin and livingunder...

    Keep asking questions. I am with you 100%. I am asking all the same questions and have been stonewalled at every turn.

  • jules67
    jules67 Member Posts: 7
    edited September 2017

    sue50.. good for you... for ALL of you... for working so hard to advocate for yourselves. I don't understand why it is so difficult to get good answers on this. WE have to be the ones to think things through and then INSIST that our providers do what's right. Something is REALLY backwards about all of this. But there are answers out there for those who are willing to dig for them.

  • Kicks
    Kicks Member Posts: 4,131
    edited September 2017

    This is a 7 yr old inactive Thread - until you pulled it up and posted. Many of those who had posted 7 yrs ago have not been to BCO at all in yrs.

    You will get more current info by asking your questions in a new Thread probably.

  • marijen
    marijen Member Posts: 3,731
    edited September 2017

    BB maybe it's because estrogen is in the tissues as well as the blood. Breast tissue makes estrogen, and it's mostly fat? I got the runaround too. I was told Letrozole is a strong drug. No s^^t

  • Mandycat
    Mandycat Member Posts: 52
    edited September 2017

    my levels tested less than 5 so I figured maybe I was low enough. Then I took anastrozole. My side effects were so dramatic I figure I must have more estrogen than I thought even at less than 5. I think most of the symptoms are the result of suppressing estrogen. But still my side effects were so severe I couldn't tolerate it. I'm scared not taking it but taking it was wors

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