DCIS HER2+ that turned into IDC HER2- anyone else??

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divina913
divina913 Member Posts: 45
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I was originally daignosed with DCIS HER2+ when i had 1st lumpectomy done. then they discovered 1cm Invasive Duct cell. Path report sd i was HER2+....started chemo Jan 2012 & due to some allergic complications, chemo treatment was STOP!! That was @the end of April 2012. I went to MDA in Houston for 2nd opinion!! I was told by MDA that i'm HER2-!!! WHAT A SURPRISED!!! MDA also sd no need for further chemo/herceptin. Port can be taken out!! Proceed with Radiation! Per MDA "DCIS" is highly almost always HER2+ due to it's the most concentrated area of the tumor. However, if you can get a "Clear Margin" from DCIS lumpectomy, then your clear. It's more important to check for HER2 in the Invasive cell portion of the tumor. My Invasive cell was tested by MDA for HER2 & it came back NEGATIVE!!

I would really appreciate it if anyone out there went through this same senerio if you could chime in here & share your journey with me. Thanks!!

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  • Rina77
    Rina77 Member Posts: 12
    edited January 2013

    I diagnosed with HER2 + and my oncologist said its always will stay positive, no way to turn it off.

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  • Beesie
    Beesie Member Posts: 12,240
    edited January 2013

    divina, 

    I haven't had the same experience but I've read up quite a bit on changes that may occur as DCIS progresses to become IDC.  From what I've read, ER status and PR status can change as a cancer evolves from DCIS to become IDC.  The studies I've seen indicate that HER2 status usually doesn't change, but 'usually' (98% - 99% of the time) doesn't mean 'never' (100% of the time).  

    Approx. 40% to 60% of DCIS is HER2+, but only 20% to 25% of IDC is HER2+.  So far, no one seems to know why this is.  So your comment that "It's more important to check for HER2 in the Invasive cell portion of the tumor" is very important.  Although it appears to be very rare that HER2 status would change between DCIS and IDC, it is possible.  So one should never assume that the HER2 status of one's IDC (or the ER or PR status) is the same as the HER2 status (or the ER or PR status) of one's DCIS.  The IDC should always be tested separately. 

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  • divina913
    divina913 Member Posts: 45
    edited January 2013

    Wow thank you Bessie...i was very confused & concerned to which one i was?? Scary thought as Onc/medical team try to figure us out while it's our body that they're flip-flopn about..lolol I really appreciate yur shared information ;)

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  • divina913
    divina913 Member Posts: 45
    edited January 2013

    Thx for responding Rina,,ya HER2 status for DCIS will remain the same...However it doesn't have to be the same if you DCIS turns into IDC...in which IDC can have different HER2 status. That's what happened to me!!

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