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100% ER+ 100% PR+ HERS2- How common is the 100% diagnosis?

Posted by janisbrede @janisbrede, May 2, 2023

When I went to Mayo for a second opinion they saw my initial diagnosis of 100%ER+ 100%PR+ and said that would probably change when they did their evaluation but it came back 100% ER and PR+ as well. Does this mean I am extremely sensitive to hormones? Anyone else 100%...seems drastic to me, not in a good way. I'm worried I should be a little more cautious with what I put in body to try to reduce hormones although I am on Tamoxifen to block hormone receptors. I just don't fully grasp how this is all connected.

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sirene | @sirene | May 3, 2023

Yes, that is it. Sorry about that.

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marciapell | @marciapell | May 3, 2023
In reply to @windyshores "I used to think we should avoid soy with cancers that are responsive to estrogen, but..." + (show)
@windyshores

I used to think we should avoid soy with cancers that are responsive to estrogen, but have since that is not true. I am not sure what other foods are estrogenic. But the Tamoxifen addresses the estrogen receptors so my understanding- check with your doc- is that in some ways it doesn't matter what level of estrogen is floating around in your body, the receptors are being shut off by the med and the estrogen is not getting to any potential cancer cells. I hope your doc can clarify this.

Aromatase inhibitors used after menopause, on the other hand, deal with the amount of estrogen in the body, not the receptors, so estrogenic foods would seem to be more of an issue there, but I am not aware of any so maybe someone else can enlighten us.

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Evidenced-based nutrition info can be found here. Lots of covered topics. It might be easier than you think. https://cancerdietitian.com/

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janisbrede | @janisbrede | May 4, 2023
In reply to @cctoo "I would think that after !menopause we would have ledd estrogen bu at 86 Im 100%..." + (show)
@cctoo

I would think that after !menopause we would have ledd estrogen bu at 86 Im 100% er positive

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I believe the 100% doesn't mean we have an excess amount of estrogen in our bodies. The 100% describes the cells the doctors analyzed. Of those cells they looked at under a microscope 100% of the cells were had receptors for estrogen, meaning they grow when they are fed estrogen. So I take Tamoxifen, which attaches to these cell receptors so the cancer cells can't grow. This is my elementary understanding at any rate!

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windyshores | @windyshores | May 4, 2023

Yes @cctoo the 100% does not refer to the level of estrogen in your body. It refers to the responsiveness of your cancer to estrogen. ER+ tumors have estrogen receptors. Since your cancer is 100% fed by estrogen, estrogen blockers like tamoxifen or aromatase inhibitors would be very effective. Hence your low Oncotype.

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lisakinpa | @lisakinpa | May 5, 2023

I’m right behind you at 98%. I’m post menopausal so I’ve been on an AI (Anastrozole) for almost four years of five and doing very well. ♥️

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anjalima | @anjalima | May 5, 2023

I’m 98% ER+, on Anastrozole, post mastectomy, for 1 of 5-7 years, Tolerating well and clear MRI at one year. Hopeful!

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janisbrede | @janisbrede | May 6, 2023
In reply to @anjalima "I’m 98% ER+, on Anastrozole, post mastectomy, for 1 of 5-7 years, Tolerating well and clear..." + (show)
@anjalima

I’m 98% ER+, on Anastrozole, post mastectomy, for 1 of 5-7 years, Tolerating well and clear MRI at one year. Hopeful!

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Do you know if it is standard to get an MRI one year post mastectomy? It hasn't been mentioned at my appointments. I am only 7 months post mastectomy and go for implants next month but a baseline MRI sounds like a good idea.

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anjalima | @anjalima | May 6, 2023
In reply to @janisbrede "Do you know if it is standard to get an MRI one year post mastectomy? It..." + (show)
@janisbrede

Do you know if it is standard to get an MRI one year post mastectomy? It hasn't been mentioned at my appointments. I am only 7 months post mastectomy and go for implants next month but a baseline MRI sounds like a good idea.

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Due to breast density a mammo nor an ultrasound detected two tumors in one breast but an MRI did. So I now get a mammo and MRI annually 6 mos apart. I don’t think MRI a standard procedure BUT IMO it should be.

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salamander | @salamander | Jun 25, 2023
In reply to @lisakinpa "I’m right behind you at 98%. I’m post menopausal so I’ve been on an AI (Anastrozole)..." + (show)
@lisakinpa

I’m right behind you at 98%. I’m post menopausal so I’ve been on an AI (Anastrozole) for almost four years of five and doing very well. ♥️

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I am same diagnosis. March 2023. I am perimenopausal amd startimf tamoxifen soon. So scared!

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jpnnobx | @jpnnobx | Jun 26, 2023

@janisbrede
My journey started July 2020 with 43% HR positive. So I did everything I could to reduce the estrogen positive from food to lotions. In March 2023, the Dr agreed to a unilateral mastectomy. When the tumor was examined, I was no longer HR positive which stunned my oncologist. From 2020 til now, I have cut out animal products (an egg and Salmon occasionally) because animals produce estrogen. I even stopped using Tupperware and candles because they are estrogen driven. I now use glass storage containers, burn essential oils, use plant based lotions, shampoos, laundry detergent, makeup, pots and pans without the harmful chemicals, you name it, if there is a plant based version, I use that. Do a Google search on estrogen driven food/products. Cancer is 5% hereditary and 90-95% environmental. Good luck with your journey.

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