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Hormone Receptor Changed From Positive to Negative

Posted by jpnnobx @jpnnobx, Mar 23, 2023

I was diagnosed with Stage 4 BC in July 2020 with a Hormone Receptor Positive, HER 2+ with METS to liver, lymph nodes and bones. No surgery was offered because of Stage 4 with 2 years to live. Fast forward to March 2023, I have gone through 76 chemo treatments as of yesterday and the surgeon agreed to a unilateral mastectomy, that took place 2 weeks ago because there was no sign any longer of cancer in the liver or lymph nodes. However I now have a Negative Hormone Receptor but still HER 2+. Has anyone else had the Hormone Receptor change from positive to negative? What is your understanding of it changing and why/how does this happen? Of course not much explanation from surgeon or oncologist and you know how Google can be! I see the good and not so good with both, again Google, and it all depends on the person, their overall general health, the tumor size, etc, but just wanted some clarification on why this usually happens? Thanks!

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anjalima | @anjalima | Mar 24, 2023

I just want to say , WOW! Good for you to have come so far from your initial prognosis!!!! So happy for you. You are an inspiration to all BC survivors. Blessings on the path 🌸

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mdr3 | @mdr3 | Mar 25, 2023

Thank you SO much for sharing your story. Wishing you all the best in your journey, but clearly a lot to hope for!!

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cathybrown98 | @cathybrown98 | Mar 26, 2023

I'm going thru what you've been doing. I haven't started chemo yet, but will soon. I have a port. I've never taken HRTs; I don't understand why I have the HER2. I have my final surgery 5/17. No reconstruction. 3 times the doc said I had an infection, 3 times he operated on the left side. 3 times my husband read in my medical records that I never had any infections. I'm sick/tired of all of it. It's very depressing and I just want to be done.

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jpnnobx | @jpnnobx | Mar 26, 2023
In reply to @cathybrown98 "I'm going thru what you've been doing. I haven't started chemo yet, but will soon. I..." + (show)
@cathybrown98

I'm going thru what you've been doing. I haven't started chemo yet, but will soon. I have a port. I've never taken HRTs; I don't understand why I have the HER2. I have my final surgery 5/17. No reconstruction. 3 times the doc said I had an infection, 3 times he operated on the left side. 3 times my husband read in my medical records that I never had any infections. I'm sick/tired of all of it. It's very depressing and I just want to be done.

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No reconstruction here either. I didn’t want more surgery. You really have to do some of your own research and luckily we now have access to our records compared to years ago. I’ve heard people talk about infection, especially if both breast were effected but luckily I haven’t. The sad thing is if you get a 2nd opinion, unless your doctor ordered it, it’s a chance they will drop you as a patient. My Dr got a 2nd opinion a year ago and they did change up the “cocktail” I was on. Good luck on your journey ❤️

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eku | @eku | Mar 26, 2023

The exact mechanism of change in hormone receptor status is not clear, as far as I know. The hormone receptor status and/or HER2 status sometimes change due to the treatment. It is the tumor's defense mechanism, it mutates to defend itself against the treatment. I have heard this happening to a few people so I'm sure your team knows how to respond.
I am so happy for you that you beat the odds of infamous "2 years". I wish they had never uttered this number to you (or me), alas. So happy that there's nothing left on the lymph nodes and the liver. Yay!
Please keep your spirits up. There's a group of us who swear by keeping our bodies active and eating plenty of (organic) veggies and fruits. Wishing you a complete healing.

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