Total estrogens came back VERY high

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andrearose
andrearose Member Posts: 20

Hi,

I just got results from a routine blood draw where I asked my primary care doc to test hormones to see if I’m in menopause. Everything came back normal except my total estrogens which are so high I don’t even want to write the number here.

My doctor is out of town so the lab sent me the results directly. I’m hoping that it’s the tamoxifen — I’ve been on for five years — or perhaps these total estrogen tests aren’t reliable. Last time I had high estradiol through my pcp my MO retested using an ultrasensitive test and it came back much lower. But I know nothing about this total estrogens test.

I know I will need to get an ultrasound which for some reason is the most traumatic test for me. It takes so long and you can’t read the persons face. It’s awful.

Anyway — I know there are many bad things this can be. But has anyone had it happen and it turned out ok? Looking for reassurance

Comments

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2020

    I think you need to wait for your doctor to discuss with you, because:

    a. Estrogen testing is unreliable because it constantly fluctuates.

    b. If you are on Tamoxifen your test results will OF COURSE show a high number - tamoxifen works by blocking estrogen receptors in cells from taking it up, so it stays in circulation. Looks like to me that a high number means the tamoxifen is doing its job.

    c. I believe that FSH, and other hormone levels are menopause determiners. Why are you telling your GP to do these tests instead of discussing with your MO or surgeon who prescribes the tamoxifen?I am not sure that your “read” of these tests results is accurate.

    d. On what are you basing “needing to get an ultrasound?” What symptoms prompt you to say that?

    e. You should not be trying to read the face of anyone doing any tests or imaging. It is meaningless

  • andrearose
    andrearose Member Posts: 20
    edited August 2020

    Thanks for the tough love. You're right -- I'm panicking. The reason I had my primary test my hormones is b/c I just can't seem to lose weight. My MO washes his hands of anything he sees as a primary care's job. It's not ideal but I go to one of the best places in the country for the cancer, so I trust him. I have been googling (I know I shouldn't) but keep seeing that high estrogen is associated with ovarian cancer. That said, I don't have any symptoms.

    But since I've been on tamoxifen for five years and need to decide if I want to do another 5 years I figure it's time for an ultrasound to compare to my baseline taken 5 years ago.

    I know I should not be trying to read the faces of the techs, it's just my anxiety talking.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2020

    If your MO thought an estrogen test was pertinent or important to your treatment or the MOs prescribing of Tamoxifenhe/she would be ordering it. Did the MO tell you to get your GP to order hormone tests?

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2020

    andrearose,

    I agree completely with melissadallas. I understand your anxiety about this is very real to you, but try not to encourage it by trying to read more into things than there really are. Also, although bco is a wonderful place for support, please remember that you are an individual and one persons experience may not be your own (even if your diagnoses are similar). Prepare a list of questions for your doctor and. let your doctor be the one to answer these questions as they pertain to you. Take care

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2020

    Also, to my knowledge, tamoxifen does not increase risk for ovarian cancer. It VERY SLIGHTLY (as in barely statistically significant- 1-2% chance) increases riisk for uterine cancer, mainly because it can cause a buildup of the endometrium, but if you are not having bleeding issues that sounds really unlikely. I DID have ovarian cancer, diagnosed at age 49. When I was in my late 30s my estradiol level was barely above menopausal level. I never heard that a high estrogen level had anything to do with it.

  • PurpleCat
    PurpleCat Member Posts: 358
    edited August 2020

    Hi Andrea, I had a similar experience, and it was very upsetting and scary but is almost over and I am going to be fine. I had an estradiol test in January as part of a menopause check and it came back over 1000, if I remember correctly. When the results hit my patient portal I did just enough googling and checking this forum to assure myself it was all due to tamoxifen, but then the doctor called and told me I was scheduled for an urgent ultrasound and CA-125 test. Clearly she was expecting to find some monstrous ovarian tumor, and it was terrifying, but by the next morning I had those results and they didn't show anything like that. By early March, after a series of scans and blood draws that had turned February into prolonged scanxiety without coming up with anything remotely interesting except a couple of benign looking ovarian cysts and a thickened endometrial lining, I had been scheduled with a gyn/onc surgeon "to be in the best hands possible just in case." She wasn't at all worried about the ovaries, which had been my biggest fear, but was concerned about the possibility of endometrial cancer due to the tamoxifen. To summarize a complicated story, I had an in-office endometrial biopsy that came back benign, had a D&C and ovaries/tubes removed in March, got a surprise dx of complex atypical endometrial hyperplasia after that surgery, was allowed to wait until July for another D&C to see if it would calm down in the absence of tamoxifen and estrogen, learned that it hadn't, and had a hysterectomy last week. There's a better chance than I'd like that they'll still find some cancer in the endometrial lining, but if so, quite a good chance that the surgery has already removed all of it.

    So ... I can't say unequivocally that it's turned out OK until I get that final pathology report and I finish recovering from this hysterectomy, but I am definitely an example of a person who had an off-the-charts estrogen level and did not have ovarian cancer ... and now, never will!


  • andrearose
    andrearose Member Posts: 20
    edited October 2020

    I wanted to just add my outcome (so far) on here in case anyone has this happen and gets scared. Of course, this is just my experience but I wanted to share that I just did a transvaginal ultrasound yesterday and things look good. I have a 3.5cm cyst on my ovary that doesn't look worrying and some fibroids (which I already knew). I went off of tamoxifen a few weeks ago (just taking a little break after 6 years on) and I'm hoping that it will help my estrogens return to normal. My gyn is testing my estradiol again in a month.

    PHEW. And PS: That ultrasound traumatizes me every time! It takes so darn long and I just hate the feeling that another person (the technician) knows what's happening in my body and I don't. That said, I'm glad I did it.

    Thank you all for the support!

  • PurpleCat
    PurpleCat Member Posts: 358
    edited October 2020

    So glad to hear! And you touched right on one of the things I find so stressful about medical testing: I hate having other people know things about my body that I don't, knowing that something could be badly wrong even though I feel just fine. Thanks for affirming what others in my life don't always seem to understand. Let us know how the test turns out!

  • andrearose
    andrearose Member Posts: 20
    edited November 2020

    I'm glad it's not just me. I feel like it must be a weight to the technicians, too, when they see something suspicious and they have to act neutral. It's just...not a normal thing to go through and I really get in my head about it!

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited November 2020

    Recently I read that prostrate cancer might start producing its own testosterone even though an Rx is used to stop/block production. Has anyone heard if ER+ cancer might produce its own estrogen in response to AIs or Tamoxifen? I did not know this before seeing my oncologist earlier this month, so did not have a chance to ask her. My estrogen has never been monitored before/during Tamoxifen or AI. When I ask, I'm told that monitoring estrogen is not part of the standard of care. So it sounds like I could pay for a test with the usual blood draw for WBC. I will post this on other AI and tamoxifen threads, sometimes it seems like information is scattered.

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