Any friends out there? HER2 positive and negative?

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Elizabeth7
Elizabeth7 Member Posts: 25
edited March 2017 in HER2+ (Positive) Breast Cancer

Hi.

Recently diagnosed with a 2.6cm, grade 2, stage IIa IDC tumour. HER 2 was equivocal so they sent part removed during surgery for oncotype testing and the part taken by core biopsy which initially diagnosed the cancer for FISH. Oncotype came back low at 16 and HER2 negetive, FISH on other part of the tumour came back HER2 positive. Oncologist said I have a heterogeneous tumour. Lined up for chemo, radiotherapy & herceptin.

Anyone out there with similar stories or information. Try to keep it positive as I'll freak out if I hear bad ones!!

Elizabeth - Joining in from Ireland :-)

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2017

    Hi Elizabeth. Maybe you find this read helpful till you get responses to your thread: Test result differences in HER2 status?

    Kind wishes,

    The Mods


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  • hunny1208
    hunny1208 Member Posts: 5
    edited February 2017

    hi elizabeth. I have just recently been diagnosed as well with stage 2A HER2+ positive. Just had my lumpectomy last January 24 and is still waiting on my oncologist's recommendation on the next step. But i'm scared of going thru chemo and is considering just radiation therapy. Anyway, i'm jst new to thi site as well and still gathering as much info as i can.

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  • Elizabeth7
    Elizabeth7 Member Posts: 25
    edited February 2017

    Hi hunny

    I moved over to reading the posts on the Triple Positive thread as there are hundreds of responses and loads of information there. I know you aren't triple positive but I recommend you take a look - its here under the HER2+ category. I have to have chemo, radiotherapy, herceptin and tamoxifen. I thought with HER2 + you had to have chemo but it may vary from oncologist to oncologist. My doctor told me its the herceptin that has really changed the outcome for patients that are HER2+. I'm dreading the chemo but again I have really got loads of information off that other thread - icing, vitamin B6 etc.

    Take a look....lovely to hear from a newbie going through the same as myself.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2017

    hunny - I think standard of care for HER2+ is still chemo with herceptin.

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  • Sassa
    Sassa Member Posts: 1,588
    edited February 2017

    I just wanted to let you know I was diagnosed in November 2006 with Stage 1, ER/PR-, Her2+ IDC. I had a mastectomy, chemotherapy (4 AC) and one year of herceptin.

    I am NED and hope to remain that way.

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  • PezGal
    PezGal Member Posts: 99
    edited February 2017

    Hi! I wasn't diagnosed back in late 2015. My info is below. BMX, chemo, hair loss, rads, burns, oophorectomy, DIEP flap. Other than some DIEP flap "touch up" surgeries later this summer, I am finally done. I'm not gonna lie, it sucks. Of course it's not fun. But, the good news is that it's temporary and very doable. You can can do this! Just take it one day at a time, be gentle with yourself, and know that it does get better.


    And don't google. :

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  • mistyeyes
    mistyeyes Member Posts: 584
    edited February 2017

    Hello- I am HER2+ I get #5 of 6 HPTC on Thurs . After #6 I get Herceptin till December.

    Sassa - I am also from Homosassa FL

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  • Sassa
    Sassa Member Posts: 1,588
    edited February 2017

    Hi, Misty Eyes!

    I live in Sugarmill.

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  • Bluebird1013
    Bluebird1013 Member Posts: 33
    edited March 2017

    hi hunny,

    Not too many of us pr/er negative Hers2 positive. My DX was lumpectomy clean margins, Small 1.4 centimeters tumor. 4 sentinel nodes removal no cancer. I was floored by my treatment path.

    I will have 1 x week for 12 weeks chemo (taxol) and herceptin. Herceptin will continue every 3 weeks for 1 year. After the 12 weeks of chemo I will have radiation 5 x week for 5 weeks then2 x week for 4 weeks. Received port today. March 2. Chemo starts March 7.

    They say the hers2 positive has high rate if recurrence so that is why the chemo. I am very nervous about it also. But if this is the best to not have to face this again I will do it. I know ladies not doing chemo and doing the watch and wait. I guess if you're given a choice then you have to do what you are comfortable with.

    Did you see Facebook site starting for those of us that want to join? Might be easier to converse. Hugs to you.

    https://m.facebook.com/groups/679327412250064?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2017

    Bluebird, I've found quite a few women on BCO who are hormone negative and HER2+. I do not do Facebook at all. I would not want my information shared on that medium. However I do trust most of the posts on this site.

    I was hormone negative & HER2+. I did neo-adjuvant chemo - TCHP. I did not have pCR (complete response). So after surgery, I did more chemo (AC). Then rads. I also continued Herceptin every three weeks for 17 infusions. So far - three years down the road- I'm still NED.

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  • Sassa
    Sassa Member Posts: 1,588
    edited March 2017

    Bluebird,

    Yes, we ER/PR-, HER2+ have a very high rate of recurrence WITHOUT treatment. Our cancer is aggressive and fast growing. HOWEVER, for us chemo is very effective (because the cancer cells are dividing and that is when the chemo drugs destroy them) and herceptin is the lifesaver.

    Our highest chance of recurrence is within the first year of diagnosis and, with treatment, starts to drop after that. Three years out is also a milestone on recurrence chances. At five years, recurrence changes drop down into the single digit percentage rates, and at eight years, the chance is almost zero.

    I was diagnosed in November 2006. I am NED and that this point, am probably in permanent remission.


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