ILC and triple positive. False HER2 positive?

SoozyCue
SoozyCue Member Posts: 43
edited March 2019 in ILC (Invasive Lobular Carcinoma)

My first HER2 result was equivocal. The second result was positive. I don't know at this time which type tests were done.

My surgeon isn't counting on the HER2+ being accurate until surgery and that pathology because it is rare for someone with ILC to be HER2+. He is widely considered the best breast surgeon in the area, employed by a hospital in the Jefferson Hospital network (Philadelphia), does 300 surgeries a year, and he has seen it once in his career.

My PCP thinks it's accurate because many of my problems are rare and one of my rare problems requires a strict medical diet that is mostly comprised of all of the foods that are bad for HER2. My PCP has treated me for over a decade and manages all of my (significant) medical issues. He speaks often with my specialists and surgeons, so he knows (at a higher level) every thing going on with my body.

I know there is no way to be 100% sure until my breast surgery (week of 7/16 at the earliest) but what is there general experience/frequency here with women with ILC that are HER2+? I found a couple threads, but older, and not really addressing the possibility of false positives.

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Comments

  • RobinLK
    RobinLK Member Posts: 840
    edited July 2018

    You should also post this question on the Triple Positive thread. There are not many of us with ILC there, but there are many knowledgeable women and one may have an answer for you.


    https://community.breastcancer.org/forum/80/topics/764183?page=1100#idx_32971

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  • SoozyCue
    SoozyCue Member Posts: 43
    edited July 2018

    Thank you. I didn't notice that one yet, but I will go look.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2018

    In the last two pages of the Triple Positive thread there are two current members posting who are ILC and Her2+, as is RobinLK (hey girl!) above, so it definitely does happen. ILC represents about 10-15 percent of diagnosed breast cancers, but don't be thrown off by the dichotomy of ILC being a slower growing type and Her2+ more aggressive, as if they can't co-exist - as they are two completely different aspects of growth and are independent of each other.

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  • RobinLK
    RobinLK Member Posts: 840
    edited July 2018

    Hi SpecialK! You are exactly one of the knowledgeable women I was referring to!!

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  • Mincross
    Mincross Member Posts: 1
    edited March 2019

    hi soozycue

    I am new to the forum and was diagnosed 21.12.18 with ILC er+ pr+ her2+ Grade2

    The initial plan was a mastectomy however following mri and it was found that the right breast had extensive disease ( most of the breast) main tumour 7x6cm. The plan was changed to neo adjuvant chemotherapy. 3 x EC followed by 4 x Docetaxel, Pertuzumab, trastuzumab.

    I have done the EC and start Docetaxel etc next week.

    So anyway just saying hi 👋 I agree there isn’t many of us triple positive ilc fighters out there it seems.

    Min

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    Mincross, we wanted to say hi, and welcome to Breastcancer.org! We're so sorry you find yourself her but glad you decided to join us.

    Latest activity of soozycue in the forums was Sept 2018, so not sure that she's still around. If you want, you can try sending her a private message. Let us know if you need help with that, we're always here!

    Again, welcome to the Community! And please, post again to let us know how you're doing.

    Best wishes,

    From the Mods


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