How I got her2 invasive breast cancer...

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Roxy3
Roxy3 Member Posts: 26
edited June 2014 in HER2+ (Positive) Breast Cancer

 As you may know, some DCIS or precancer will have positivity for her2, which left to invade will become invasive her2 bc. My orginal lump was left to grow because I was told by doctors that it was benign when the pathology was really misread and it was DCIS positive for her2. You can read more details about my misdiagnosis on Fight PInk...

 "Robin's Story- Misdiagnosis"

 http://www.fightpink.org/survivorship-stories/robins-story-misdiagnosis.html

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  • JoniB
    JoniB Member Posts: 346
    edited February 2009

    Robin, I thought that DCIS is usually not tested for her2, since it usually is.  However, if you have DCIS and an invasive component, the invasive component does not have to be her2 positive. 

    I am sorry that your were misdiagnosed and hope that you are doing well.  

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  • Liz08
    Liz08 Member Posts: 470
    edited February 2009

    Robin-

    usually DCIS is not tested for the her2 status since it has no meaning for plain DCIS which is stage 0, non invasive and contained.

    I have also been told and read that most of the time DCIS is her+++. Keeping that in mind,  I find it confusing that if DCIS becomes invasive why isn't the majority of invasive breast cancer her+++ too?

    Robyn, I'm sorry that you were misdiagnosed but for whatever reason Her2+++ DCIS is not always positive in the invasive component too.   Wishing you the very best.

    I just read your story and thank you for sharing it.  

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  • Roxy3
    Roxy3 Member Posts: 26
    edited February 2009

    Thanks, Liz and Joni for the well wishes. I know that my orginal biopy of my breast lump that was misread was DCIS with comedo necrosis which is a pretty aggressive precancer, often her2+, that will invade, if left untreated. What I learned through my misdiagnosis is that it is common, especially in young women.I hope my posted survivor story concerning my misdiagnosis in Fight Pink will help others and increase awareness of the epidemic of breast misdiagnosis in young women.

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  • mollyann
    mollyann Member Posts: 472
    edited February 2009

    Does anyone know when they started using the HER-2 test? My mom never had it when she was diagnosed. Does that mean there a lot of women walking around HER-2 positive who were never treated? Can their slides be accessed and re-evaluated?

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  • anianiau
    anianiau Member Posts: 182
    edited February 2009

    My understanding (from an RN moderator in a breast cancer support group) is that Her2 testing came into use about 1998.

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