HER2 - Undeterminable? - And question about Treatment for ER/PR+

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Each_day_2018
Each_day_2018 Member Posts: 154
edited July 2018 in IDC (Invasive Ductal Carcinoma)

I'm a frequent lurker, but first time poster....I was diagnosed on June 28.

Just had my follow-up appt today following my biopsy result (doctor did let me know it was IDC after 2 days, but didn't have all the details). He said ER/PR + but the HER2 was undeterminable. He recommends a Mastectomy w/reconstruction for now. I am waiting for BRCA testing due to my age (31), and if that is positive, they recommend double mastectomy. He said they'll know more about stage, grade, size, etc after the surgery. Right now it measures approx. 2.3cm, but I know that is not 100% accurate.

Has anyone else had an undeterminable HER2 status? What was the ending result? Should I request further testing, or just wait until surgery? Also, what type of treatment did you have with ER/PR positive?

He could not tell me definitively what type of treatment I would need until after the results of the surgery, and as a working mom, I just want to make sure I am able to plan and prepare. He mentioned with the information we have now, I would probably have surgery and radiation with hormone therapy, but that could change after results from the surgery. I'm also not sure where the HER2 status comes into play with treatment. I know going through chemo and radiation can be very different, so I just don't know what to expect! I know waiting is the hardest part, but has anyone else gone through a similar situation or have any insight? I feel like I've circled Google so much, that I don't know right from left now and feel more confused.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2018

    Hi!

    It sounds like your initial test via immunohistochemical stains (IHC) produced an equivocal result for the overexpression of the HER2+ protein. Your sample should automatically be sent for the FISH (Fluorescent in situ hybridization) test. In most cases, the FISH test will clear up whether or not you do in fact have an overexpression of the HER2+ protein.

    If your cancer is HER2+, your doctors will recommend chemo and targeted therapy (Herceptin and maybe also Perjeta). If your cancer is HER2-, your doctors should have your cancer sent out for an oncotype test. That test determines whether or not the benefits of chemo outweigh the risks. Thanks to the oncotype test, many women no longer receive chemo for early stage breast cancer.

    Your doctors will recommend hormonal therapy because you are ER+/PR+. Whether or not you get radiation depends on:

    1. your surgical choice (some women who choose a mastectomy get to skip radiation; women who choose a lumpectomy typically do radiation)

    2. whether or not any of your lymph nodes are compromised

    3. the size and aggressiveness of your tumor (my doctors would have recommended radiation for me regardless of whether I chose a mastectomy)

    Hope this helps!

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  • Each_day_2018
    Each_day_2018 Member Posts: 154
    edited July 2018

    Thanks for the info! it is definitely helpful. He may have mentioned about the FISH...I think I was trying so hard to absorb all the information, he was just going too fast! My husband was taking notes too

    *Side note, we were diagnosed on the same day...just 4 years apart.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2018

    Yes, June 28 was my fourth "cancerversary." Oh Happy Day!

    I was a working mom during treatment, too. I was able to work through chemo and radiation, thanks to having a supportive supervisor and generous colleagues. Hopefully, you won't have to do chemo as that is more time-consuming and has more side-effects than radiation. I also chose my surgery (lumpectomy) with work in mind. I couldn't take time off for major surgery and reconstruction (which often involves multiple surgeries and complications). Good luck!

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

    Before you make a decision about surgery you need the result of the reflex testing with FISH for a definitive answer on the Her2. It is relatively common to have an equivocal Her2 result, but it is important to know before a surgery decision what the status is as this may determine the order of treatment. If you are in fact Her2+ with a larger than 2cm tumor, you are a candidate for chemo prior to surgery with targeted therapy (Herceptin and Perjeta) for the Her2 aspect.

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