It feels like a bad dream

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PurpleCat
PurpleCat Member Posts: 358

A routine consult about birth control 2 weeks ago led to blood tests to check for menopause. The estrogen level came back over twice as high as it should be. A quick search of this forum revealed enough evidence that tamoxifen can do this to seem reassuring until the clinician called and put me on the urgent list for an ultrasound and two more blood tests. I asked if tamoxifen could do this, and said, no, not this high. I breathed a little more easily when the radiology reports (both US and CAT scan) said it appeared to be a simple cyst and I should come back in a month or two to make sure it was gone, and the CA125 was normal, but the Overa test was elevated juuuuuuust enough to get me referred to a gyn/onc surgeon ... who can't see me for almost another 3 weeks!!! And he wants more blood numbers first. I feel like I'm in a nightmare.

I've exhaustively combed this forum for similar experiences of super-high estrogen, even higher than mine and although there aren't that many, there are enough that it appears to be A Thing, and most of the doctors appear to chalk it up to tamoxifen without further investigation. And I've found a few case reports and other studies online that indicate it's not unheard of, if not highly common. On the one hand, I have reassuring images of what appears to be a simple "check back in two months" kind of cyst, a normal CA125 score, and some evidence that tamoxifen can do this. On the other hand, there's this Overa test that seems to insist something is amiss. It's bad enough having to go through a month of fear and anxiety and repeated orders to get more testing and then waiting for those results ... everyone here knows how it goes. But seeing how most everyone else who's been in this situation seems to just get reassurance from their doctor without further investigation makes me feel like the kid in the neighborhood whose mom won't let her ride her bike off the driveway but makes her stay home to practice penmanship while all the other kids bike off to the ice cream shop and have a party. Of course I want them to catch cancer as early as possible if that's what it is, and based on the imaging, if something is going on it really HAS to be super early and I should feel very lucky to have a chance to catch it before it even shows up on imaging. The clinician even said that if it weren't for the estrogen they wouldn't be referring me, but because of the estrogen and the Overa test they can't let it go and have to do more blood testing. The Overa test isn't that high; in fact, it gives me slightly over an 80% chance that it's benign, which would feel a lot more reassuring if that wasn't the same chance my breast calcifications were going to be benign, which they weren't. But I feel like one more blood draw and then the torturous wait for results is going to push me over the edge into a full blown panic attack. Why couldn't they just have done ALL those tests already?

Don't know what I'm looking for here except any possible reassurance. So, please don't anyone tell me the awful things it could be. I have stopped googling because I just don't want to know. I've realized that the only thing that can possibly make me feel better would be good blood numbers on these additional tests, but in order to get them I have to take the risk that they'll be bad numbers that will devastate me and make the wait even more torturous.

I hate hate hate HATE HATE HATE this. And I hate hate hate HATE HATE cancer.


Comments

  • Dani444
    Dani444 Member Posts: 522
    edited February 2020

    Purplecat- I don’t have any insight into your situation but I wanted to say I am sorry you are going through this testing and waiting. I will be thinking of you and sending good thoughts. I wish I could offer you more. Also, right there with you on HATE,HATE,HATING f-ing cancer.

  • PurpleCat
    PurpleCat Member Posts: 358
    edited February 2020

    Thanks, Dani. I really appreciate the kind thoughts! Hope you are doing well ...

  • gb2115
    gb2115 Member Posts: 1,894
    edited February 2020

    I'm so sorry that you have to get more testing. Cancer definitely sucks, and seems to be the gift that keeps on giving. :-(

  • WC3
    WC3 Member Posts: 1,540
    edited February 2020

    PurpleCat:

    My 30s were a mess of hormone problems and answers and explanations were sparse. It's a massive pet peeve of mine that this subject isn't more illuminated, often leaving women in the dark about what is going on with our bodies, and often leaving us to suffer with symptoms that greatly reduce our quality of life.

    Someone needs to pin this stuff down.

  • PurpleCat
    PurpleCat Member Posts: 358
    edited February 2020

    Thanks, all. I had my biannual checkup with my breast surgeon/oncologist this morning. She had access to all my reports from the clinic and testing. She squinted at the high estradiol number and said "huh ... might be because of tamoxifen; it is, after all a (can't remember what she called it but it was a two-word phrase with "estrogen" in the name.)" I was hoping she'd say she sees this all the time, and she didn't, but she didn't seem terribly concerned about it. She did say they don't usually test estrogen levels, which made me wonder if they'd see more of it if they DID test estrogen periodically. She told me the report said the cyst was probably benign and not to worry about it, but if my ovaries are going to give me this much trouble I can opt to have both of them taken out along with the tubes, which was a relief, as I'd already decided to push for that when I see the gyn/onc and don't want to have to argue as to whether or not it's overkill. So, I'm feeling talked off the cliff and able to cope with the two week wait before seeing the gyn/onc. Maybe even brave enough to go get those last ovarian tumor marker blood tests they're making me get AND view the results on my patient portal. If they're in normal range, it would be a huge load off my mind; it's just that in order to get that relief I have to take the risk that they'll be abnormal.

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