LCIS: What treatment(s) did you choose?

Posted by mayo101 @mayo101, Sep 23, 2022

Hello, I have been given the diagnosis of LCIS a few months ago, not invasive yet. After reading posts about invasive lobular carcinoma and that it is more difficult to treat than invasive duct carcinoma, I am now seriously considering pushing for a double mastectomy rather than taking tamoxifen, which will just lower the risk by 50%. Is there any LCIS patient whose doctor advise against this aggressive route? My doc isn’t totally against it given my age of 52. Any thoughts?

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I thought blood tests only tested below a certain level. According to Mayo Medical Laboratories, "normal levels of estradiol (E2) for menstruating women range from 15 to 350 picograms per milliliter (pg/mL). For postmenopausal women, normal levels should be lower than 10 pg/mL. "

Did you get test results below that? I didn't know tests could do that. The manufacturers of aromatase inhibitors tested in their studies for "undetectable" levels of estradiol. I wonder if that is lower than 10 pg/ml.

If we develop a cancer that is highly responsive to estrogen (like 98%), it seems possible that our bodies do indeed have enough estrogen to feed cancer. Or maybe it's other factors. I am just speculating.

Cancer docs don't test our hormones, I imagine because they 1) figure the tests aren't sensitive enough to pick up the low levels produced by the adrenals and 2) they assume, with a high ER score, that estrogen played a role in the cancer and that those meds will help.

This question comes up a lot. I really personally believe that oncologists would be testing our hormones if they thought we could then safely avoid meds. And @celica maybe try one before deciding on side effects. Some of us didn't have a lot, and they tend to ease over time in my experience, so stick with them for a bit maybe.

Here are the hormones that can be tested:
Estrone (E1) is the primary hormone your body produces during menopause and postmenopause. It’s a weaker form of estrogen than estradiol (E2).
Estradiol (E2) is the primary hormone your body produces in your reproductive years.
Estriol (E3) is the primary hormone your body makes during pregnancy.

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@slmremy

I too had LCIS stage one. I was “lumpy” for years. After annual mammograms for years 50-61. Talk over the results with my internist started things rolling - I had a second opinion who wanted me to wait - Onco/surgeon. I went to talk to an oncologist who asked to an mri - which was went the extensive nature of my tumor “field” was found. I had more than a few Tumors in each breast, one side invasive. That was found after the Bil Mx. So I appreciate that it is very difficult to visualize these tumors. That was when I decided having the bil mastectomy made the most sense of all the choices and I am glad I did it.

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Hello, can you tell me what kind of post mastectomy screening you do? I too had double mastectomy for LCIS. I did not do reconstruction. I am wondering what follow up screening people do after double mastectomy.

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