New and Nervous! Her2/Pr/Er

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daizeemay
daizeemay Member Posts: 2
edited June 2014 in HER2+ (Positive) Breast Cancer
I was just diagnosed a little over a month ago with IDC. The tumor turned out to be .3 cm. I opted for a lumpectomy. The surgeon said I would just need radiation after that. But the path report came back with Her2/neu positive, er+, pr+ and grade III histomology. The nodes were clear and the margins were clear, but now the oncologist is telling me I should have chemo as well. Is he being overly cautious, or am I being naive? This seems like overkill from what the surgeon had told me. But now that I read all that you have to say on HER2 stuff. I'm beginning to think it's a bigger deal than I thought. I know no one wants to go through Chemo. My mom had breast cancer a long time ago. I don't even know if they had tests for Her2 and the like back then. and her mom died from cancer. So I want to make the right decision here.

Also, could someone explain to me the letters used here? Like TH, TAX, AC, and the like?

Thank you!

Daizee
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  • cyclepath
    cyclepath Member Posts: 5
    edited May 2007
    Hi there,
    I am also new here so not much help in answering your question because I have the same one...and more. I'm a triple positive too with a .9 cm tumor removed by lumpectomy two weeks ago. I will meet with the onco for the first time on Monday; then a 2nd opinion on Friday. My surgeon suspects I'll get varied answers and will ultimately have to make my own decision regarding the chemo and choice of partial vs full breast radiation. I think Herceptin is a given. I do believe that, once I have all the information they can give me, the answers will appear -- and perhaps answers will appear here too.
    I wish you the very best!
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  • sassyone
    sassyone Member Posts: 26
    edited May 2007
    Daizee and Cyclepath,

    All the letters refer to various types of chemo or targeted therapy. I, for example, had DD A/C, T/H, which means dose dense(given every two weeks) Adriamiacin and Cytoxin followed by Taxol and Herceptin.

    As far as treatment for you, the most aggressive treatment would be similar to mine, however I was stage IIB with positive nodes. There are two schools of thought on early stage node negative HER2+. The most agressive would be similar to mine. The second option is Herceptin only. I would recommend you get a couple of medical opinions and make your choice based on the information you gather. I can also recommend the her2support site which has a vast amount of information and is dedicated to knowledge about her2+ breast cancer and support of women like you and I. It has been a life saver for me.

    Here is a link

    http://her2support.org/vbulletin/forumdisplay.php?f=28

    Be sure to read the thread here on triple positive too. I'm Stage IIb, 5 of 14 positive nodes and NED (no evidence of disease) for over two years.

    Good luck to you both. You will find lots of support here too!

    Sassy
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  • daizeemay
    daizeemay Member Posts: 2
    edited May 2007
    Thank you Sassy and Cycle! This is all so new to me and I feel like I'm swimming in a sea of unknowns. It's nice to have someone to take to who has been (or is now) going through it. We are not alone! I'm not sure how to go about getting a second opinion with my HMO, but I'm going to look into that.

    Thanks for taking the time to weigh in!

    Daizee
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  • sassyone
    sassyone Member Posts: 26
    edited May 2007
    Chemo is not fun, but it is doable. I wanted to do everything I could do beat this now and hopefully not have to deal with it again in the future.

    You have a very good prognosis--keep positive!

    Sassy
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  • atdec05
    atdec05 Member Posts: 37
    edited May 2007
    Hi Daizee,

    It sounds like you are a good candidate for the Oncotype DX test which will tell you how likely you are to benefit from chemo. You could ask your doctor to give you this test. Also, with your family history I would think you would be tested for the BRAC1/2 gene.

    This would all be useful in deciding about chemo.

    take care, Anna
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  • Annaanne
    Annaanne Member Posts: 190
    edited May 2007
    Daizee
    Sassyone had very good advice about checking the Her 2 Support Website. Spend some time and read that site.
    Without herceptin, Her 2+ breast cancer is a lot more likely to metastisize. From what I can tell, herceptin has made a huge difference. Whether you need chemo also is something to investigate. I don't want to be alarmist, but her 2 + bc is aggressive. Herceptin has dramatically changed the prognosis for this kind of bc. I would want herceptin (and possibly some form of chemo, if recommended), even if the tumor was very small.
    A (her 2 pos)
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  • lexi4
    lexi4 Member Posts: 1,074
    edited May 2007
    HI Daizee,

    The ladies have offered great advice. I just wanted to say welcome and that I am sorry that you are dealing with this cruddy disease. However, it sounds like your prognosis is good! I agree with the others, I'd want the herceptin no matter what! It has made such a difference in her2+ bc. Hang in there!


    Hugs,
    Lexi
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  • saleboat
    saleboat Member Posts: 71
    edited May 2007
    Hello Daizee,

    Sorry you had to join us here. Great advice from the others...and you'll gets lots of specific advice on her2support.org

    Her2 used to be considered a 'bad' cancer (aren't they all?) but the use of Herceptin has really changed the outlook for us. I was diagnosed 2 years ago with a 2.5cm tumor, and 15(!) positive lymph nodes. There are lots of us with success stories, and you will be one too.

    good luck,
    Jen
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  • skeetur
    skeetur Member Posts: 65
    edited May 2007
    I have very similar pathology to you (2 foci of IDC) largest is .3 cm, ER+/PR+/HER2+, SNB negative. I ended up having mastectomy (chose bilateral) after lumpectomy and re-excision lumpectomy didn't yield clear margins on DCIS.

    My onc is not recommending any further treatment. He is conferring with Hopkins.

    Check with your onc, mine thought that an Oncotype test might not be possible due to the very small tumor size.

    Kathy
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