Changes in HER2 status following post-lumpectomy pathology

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Joules44
Joules44 Member Posts: 51
edited November 2019 in DCIS plus HER2-positive Microinvasion

I was diagnosed in March with ER+ PR+ HER2- from biopsy pathology. Lymph nodes were clear, tumor was small. After my lumpectomy in July, my oncologist is now saying that the pathology of the tumor is showing HER2+ with my Oncotype test showing a high chance of cancer returning within the next 10 years. She is puzzled by these results, but said cancer can have different HER results in different parts of the tumor. Has anyone else had this experience? I really want to have a second HER test performed. I'm curious how common this change in pathology is seen and what path was chosen. Thanks!

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2018

    Hi Joules44, and welcome to Breastcancer.org,

    We're so sorry to hear of your diagnosis, but we're really glad you decided to join our Community and post. You're sure to get some good responses here soon, and find lots of support as you navigate this diagnosis.

    In the meantime, you may be interested in checking out the main Breastcancer.org site's page on HER2 status, which confirms that there has been some cases where HER2 status has changed, and also mentions the 4 HER2 status tests, which you may want to ask your doctor about.

    We hope this helps and we look forward to hearing more from you soon!

    --The Mods


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  • LizLynne
    LizLynne Member Posts: 11
    edited November 2018

    Hi Jules,

    I had a similar experience...was diagnosed in October with DCIS, the biopsy results indicated ER/PR+ and HER2-. Had a lumpectomy on Oct 25th and a follow up with my surgeon today, where I found out the margins weren't clean, there was microinvasion and now it's HER2+ (and ER/PR+ only 1%). Next step is a re-excision and SNB in a couple weeks. My BC thought I'd likely need rads + HT, which is still probably the case but since it's HER2+, she said we'll have a discussion about chemo. Maybe you've sought out a second opinion or had another test? Hope you're getting the info you need - I'm new to all this and found this site to be a god-send!

    Best wishes!

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2018

    Welcome, LizLynne! Thanks so much for sharing your experience. We're glad you've joined us here, and hope you find this to be a supportive place!

    The Mods

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  • Joules44
    Joules44 Member Posts: 51
    edited November 2018

    Hi, LizLynne! Your story sounds almost identical to mine. I, too, did not have clean margins after the first surgery and had to have a second. I had a sentinel biopsy done during the first surgery and luckily that was clean. Both my oncologist and I were surprised about the HER2+ results following the lumpectomy. The entire tumor was small, only 1.5 cm, and the HER2+ section was even smaller, just a tiny section. But..... because HER2+ cancer is so aggressive, it was recommended that I do Taxol and Herceptin and radiation. After extensive research, I agreed with the recommendation and I just had my 5th round of 12 infusions of Taxol. Taxol is not nearly as bad as other chemo drugs and it's been pretty manageable. I feel confident that it's the right route for me, especially because there was a vascular component to my tumor so it's possible for those rogue cells to get into my bloodstream. Please keep me updated on your journey. Our story is not very common and it's good to have camaraderie! Hope all goes well with your second surgery!

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  • yogamom2
    yogamom2 Member Posts: 82
    edited January 2019

    Hi all. I just had a lumpectomy last week following a biopsy diagnosed as DCIS, stage 0, ER/PR + both 95% but no mention of HER2 status. I will get the full path results next week but am wondering since it seems other had that listed on the original biopsy......has anyone else had it not listed on biopsy report? Also, because my ER/PR is so high I will need to see MO. I 'd appreciate knowing if anyone has any experience or suggestions regarding questions to ask or info to have before consult. Thanks so much.

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  • Joules44
    Joules44 Member Posts: 51
    edited January 2019

    My HER2 status was not listed on my biopsy report initially either if I remember correctly. I think it takes longer to get those results back. I didn’t know what it was decisively until after the lumpectomy. My ER/PR is very high like yours. This breast cancer journey is a long one with many twists and turns and it can be painfully slow at times. Know that you have plenty of time to figure it all out. And there are so many great forums on this site to join. I wish you the best of luck!

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  • Gigi01
    Gigi01 Member Posts: 1
    edited February 2019

    Hi Joules, I was diagnosed with triple negative BC and after ac chemo and taxol had my surgery and my tumor pathology came back Her2 positive. I was told it is rare for this to happen but it can. So I started my radiation ( which is now completed) as well starting Herceptin. After my radiation ended they added Perjeta to my herceptin, but I was not tolerating it well so only had about three infusions with the Perjeta. My Oncologist called a few days ago and now want to start me on Kadcyla in place of the Herceptin. I meet with him in a few days to discuss the new medication. It’s very confusing and very stressful. Gig

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  • Joules44
    Joules44 Member Posts: 51
    edited February 2019

    Gigi, I have heard about both Perjeta and Kadcyla on these forums, but my doctor has never mentioned either. Kadcyla seems to be for patients whose breast cancer has metastasized, which is not the case with me. Perjeta, however, does seem like it could be appropriate. I am having my Herceptin infusion this week so I will ask my doctor. Thank you for bringing it up. The change in diagnosis and therefore treatment is stressful indeed. Luckily, there are drugs for Her2 positive breast cancer which gives us a better chance for long-term survival.

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  • yellowb
    yellowb Member Posts: 131
    edited February 2019

    I had a similar experience -- my onc referred to it as a "marbled" cancer. I've already done taxol and AC, and am now going to do herceptin by itself. (I found your post scouting for posts about herceptin experiences.)

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  • windingshores
    windingshores Member Posts: 704
    edited November 2019

    I had a positive HER2, an equivocal HER2, and a negative HER2. I actually had 4 opinions. I had other contradictions like grade 3, LVI and high ki67% but low Oncotype. I kept going to docs until I got one who understood why this picture was troubling, and she retested my HER3 with 60 cells instead of the usual 20. My tumor was mixed ductal and lobular, and the ductal areas had stronger HER2. It is possible that my first positive result, from the biopsy, contained more of the DCIS versus invasive cancer, and I was told that DCIS is more likely to have positive HER2. The wonderful 4th doc also retested my Oncotype. Keep going until you are satisfied!

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