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Triple Positive - Losing It

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jh40
jh40 Member Posts: 140

Hi All

Found out this morning that I’m triple positive. Grade 2. Really high ki-67. And I’m absolutely terrified. I’ve spent the last 2 weeks losing my mind over the possibility of being triple negative, only to find out I was freaking out about the wrong thing.

My tumor is 1.1cm in my right. Biopsy apparently took some big bites out of it according to the path. My appointment with the breast surgeon is on Wednesday.

I’m really struggling with this and would appreciate anyone reaching out, but anyone who is also triple positive would be most welcome.

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  • moth
    moth Member Posts: 3,293
    edited May 2022
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    Triple positive is good. It gives you so many more treatment options.

    you'll want to join this thread for Triple Positives https://community.breastcancer.org/forum/80/topics...


  • cowgirl13
    cowgirl13 Member Posts: 782
    edited May 2022
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    Hi jh, I was where you are today about 13 years ago. I had absolutely no idea what to do and was terrified. I will say this, If I can do it, you can do it. As moth said there are many treatment options for us triple positives (I too am triple positive). I was scared to death to meet with my surgeon so I asked my sister to go with me. Had she not been around I would have asked a friend. To my great surprise I loved my surgeon - she was so thorough and knowledgeable. When I left the appointment I said to my sister I can do this. Something that was very helpful for me was to record our visit (I asked the surgeon if that was ok and she was fine with it). So that took away a lot of stress because I woudn't have to remember everything she said. In case you are not sure about the surgeon you can always have a second opinion from another surgeon so don't stress on that. So I had no idea what to ask the surgeon-I just showed up with my sister and listened.

    Again, as moth suggested - do look up the Triple Positive Thread as it's very helpful. Thinking good thoughts for you on Wednesday and do let us know how it goes.

    With warm regards

    Elizabeth


  • alleycat5
    alleycat5 Member Posts: 33
    edited May 2022
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    Hi JH40. I'm a newly diagnosed triple positive. I had my first chemo and Herceptin treatment today. I had lumpectomy on 3/22 with reexcision on 4/1 to get clean margins and do a sentinel node biopsy (which was clean).

    I understand completely what you're going through. When I had my first diagnosis and that first lumpectomy, we thought it was only DCIS. The plan then was just radiation after lumpectomy and Tamoxifen for ER/PR+. Then it came back IDC and margins weren't clear. Plus they tested then for HER2 which was positive. I suddenly had to add chemo and Herceptin into my plans which honestly freaked me out.

    After talking with my oncologist though, the outlook now for us triple positives is very, very good. Herceptin and targeting drugs like that have been game changers. If you google it, try not to look at articles before about 5-10 years ago. The outlook for triple positives was not good, but again, that has changed. It does mean for me once a week treatments of chemo and Herceptin for 12 weeks followed by Herceptin for a year every three weeks, plus radiation and tamoxifen, but I think we are approaching 99 percent 5-year survivability with that.

    If you want to message me, for more, feel free to do so. I know how scary this is and how you feel like it's one bad piece of news after the other, but it does settle down a bit. And do go to the triple positive page as others have said. Lots and lots of info on there, especially if you stick to some of the newer posts and not the older stuff.

    Big big <<HUGS>> to you!! We can do this!

  • angieb92
    angieb92 Member Posts: 291
    edited May 2022
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    Hi JH40!

    I was where you were in 2019. My tumor was 2cm and the biopsy broke it apart. Triple positive BC has an answer for each of the pluses on your pathology. Once you get your plan in place, you will feel more in control. I made it through treatment and still lived my life, laughed, worked, and had fun. You can do this!!

  • jh40
    jh40 Member Posts: 140
    edited May 2022
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    moth - thank you for directing me there. Hoping to connect with others like me on that thread.

  • jh40
    jh40 Member Posts: 140
    edited May 2022
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    alleycat5 - wow! First chemo today? How are you feeling? I’m sure that’s a dumb question but we’re you scared? I’m scared stiff of this. Also 12 weeks with no breaks??? How is that the way? I thought it was one week and then 3 off? I’m so new to this; I didn’t realize there would be that kind of regime.

    I’d love to talk with you more about this and will definitely message you.

  • jh40
    jh40 Member Posts: 140
    edited May 2022
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    angie92 - thank you for the kind words. that’s such good news and I really welcome it. I think my tumor broke apart because the radiologist said something like “Oh it’s destroyed.” After he took 5 samples from it. It was originally 1.1cm. Does this make a difference in whether you can get a lumpectomy?

  • alleycat5
    alleycat5 Member Posts: 33
    edited May 2022
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    jh40 - I sent you a PM, but been feeling great today after chemo (Taxol) and Herceptin. Maybe still on a steroid high, but I came home and went for a walk around the neighborhood, worked in the yard, and ate a big supper. Going to start on anti-nausea meds tonight and take through tomorrow and probably Wednesday. Have a feeling I could start feeling worse then, but hopefully not. And yes, I was scared out of my mind for chemo. But I found out today, I was letting my obsessive worrying get the best of me.