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Topic: Total estrogens came back VERY high

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Aug 23, 2020 12:36PM

andrearose wrote:

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

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Aug 23, 2020 12:56PM MelissaDallas wrote:

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

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 23, 2020 01:03PM andrearose wrote:

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.

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Aug 23, 2020 01:12PM MelissaDallas wrote:

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?

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 23, 2020 01:14PM exbrnxgrl wrote:

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

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Aug 23, 2020 01:24PM MelissaDallas wrote:

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.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 25, 2020 09:33AM PurpleCat wrote:

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!


Dx 10/2018, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy Surgery 10/18/2018 Lymph node removal: Sentinel Surgery Prophylactic ovary removal Hormonal Therapy Femara (letrozole) Radiation Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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