Concurrent ER/PR +, HER2 - and an ER/PR +, HER + tumors

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PeaceAndStrength
PeaceAndStrength Member Posts: 6

Anyone else experience both HER2 - and HER2+ tumors at the same time? It certainly seems like it could complicate or confuse things, treatment or prognosis wise, from what I have read. Sigh.

I haven't seen my oncologist yet. They still did an Oncotype DX test, even though I had one tumor that was HER2 + and that should be back this week.

I had small tumors (the largest was the HER2 + at only 6mm and 3 others under 4mm - all of those were invasive - 3 ductal and one lobular - and then a couple of areas of DCIS). I had bilateral mastectomies (DIEP flap reconstruction - 4 weeks ago). I also have negative nodes (stray tumor cells, but under 200, so they consider that negative). I go to Mayo Jacksonville and they tend to be kindness of conservative - radiation was never really on the table. Now, I don't know what to expect chemo wise. If I was HER2 - completely, I think I could have gotten away with not doing chemo, but with HER2+, I'll need Herceptin, which is only FDA approved in conjunction with chemo (and the stats are for mostly for that).

Also, I have genetic mutation that would make Tamoxifen not metabolize properly and I've read HER2 positive tumors can make you Tamoxifen resistant anyway. I am considering a hysterectomy, so I can take the aromatase inhibitors. I don't want to mess around. I am only 42 and have a 12 and 10 year old.

Any thoughts? Questions I should ask the oncologist? Any studies I could look at? I knew people could be HER2 - and the be HER2+, I just never knew it could occur at the same time. It's just like me to be complicated 😉. My husband calls me the 1% because if someone gets something, it's me (I already deal with a host of autoimmune issues and disorders that often go along with them - I am concerned that may also affect my treatment or that the treatment may triggers new autoimmune disease).

Sorry for the book. If anyone followed my rambling, feel free to comment.

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  • meg2016
    meg2016 Member Posts: 287
    edited May 2017

    I had two different biopsies which showed Her2+ and then HER2- from different tissue samples from the same tumors. According to my MO this isn't as uncommon as you would think. In my case, they said they would treat it as HER2+ and go ahead and use that protocol, including the Herceptin. I knew I had node involvement from the beginning so I was having chemo either way. I have heard of recent studies of using Herceptin only, but I believe thats only pre-surgery.

    I did opt to do have my ovaries and fallopian tubes removed and am on an AI. You don't need to do the full hysterectomy, the Oopherectomy is effective. I am 40 and have two kids of similar ages.

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