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Topic: Changes in HER2 status following post-lumpectomy pathology

Forum: DCIS plus HER2-positive Microinvasion —

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Posted on: Sep 11, 2018 01:42PM

Joules44 wrote:

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!

Dx 4/2018, DCIS/IDC, Right, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2+ (FISH)
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Sep 11, 2018 04:12PM Moderators wrote:

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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Nov 12, 2018 06:13PM LizLynne wrote:

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!

Dx 10/1/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Surgery 12/6/2018 Lumpectomy: Right; Lymph node removal: Sentinel
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Nov 12, 2018 08:49PM - edited Nov 12, 2018 08:49PM by Moderators

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!

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Nov 14, 2018 09:18AM Joules44 wrote:

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!

Dx 4/2018, DCIS/IDC, Right, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2+ (FISH)
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Jan 16, 2019 09:58PM yogamom2 wrote:

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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Jan 17, 2019 03:38PM Joules44 wrote:

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!

Dx 4/2018, DCIS/IDC, Right, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2+ (FISH)

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