Triple Positive & Grade 1 anyone?

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TYE89
TYE89 Member Posts: 16

Hello Ladies - I am so confused!

I posted this in the Triple Positive Group but wanted to start a new thread bc I think this is a rare combination.

I just got a new twist in my final path report. I am triple positive ER 90% PR 90% Her2 + (2.0 ratio, the lowest value for positive) AND GRADE 1. Has anyone known of someone that is Her2 positive & Grade 1? And I also had a 1mm micromet in 1/5 sentinel nodes. The pathology of my 1.6cm IDC tumor doesn't fit together as it should, scientifically. I know each of us is different, but I have not seen anyone's who is Her2+ & Grade 1...they don't typically go together. My SO & MO are surprised!! And I am at MDA where they supposedly see everything.

HAs anyone see any other ladies with this combination?

I am starting 6 rounds of TCHP + Herceprin for rest of the yearon Aug 21.


Comments

  • KasiaK
    KasiaK Member Posts: 17
    edited May 2018

    I know this is an old thread but here I am - triple positive and grade 1. I have only seen one person with similar diagnosis on this board. Anybody else? How do your doctors explain being HER2 positive and grade 1? Mine only said "this sometimes happens" , that`s all.

  • TYE89
    TYE89 Member Posts: 16
    edited May 2018

    Hi KasiaK!

    Yes, it looks like we are rare breed! What was your Her2 ratio? After searching & searching, I finally gave up on finding anyone else with TP grade 1. I don't think doctors really have an explanation. I know cancer can change & evolve... our grade 1 makes me wonder if our cancer started out as ER+ PR+ only & over time Her2 began to also develop. I had two FISH tests on my biopsy specimens (2.0 & 1.8 ratios) and one on the surgical specimen (2.0 ratio). 2.0 is the cutoff for negative/positive. I believe if my ratio would have been higher my cancer would have been higher grade. You are a couple of months ahead of me in treatment. I was diagnosed on May 18, surgery in July & chemo started Aug. 21. My treatment was 6xTCHP & continued Herceptin for a year. I am also on Tamoxifen.

  • KasiaK
    KasiaK Member Posts: 17
    edited June 2018

    Hi there. My HER2+ was described as +++, I haven't got any percentage. I guess 3+ is the highest score there is and still I am grade 1, with er 95% and pr 90%.

  • Gingerobrien
    Gingerobrien Member Posts: 23
    edited July 2018

    I also have the same diagnosis. My tumor was supposed to only be 9mm but when taken out at surgery was 1.6cm. I had my lumpectomy on July 2nd and am waiting to meet with the oncologist.

  • ColleenS80
    ColleenS80 Member Posts: 271
    edited July 2018

    Hi there,

    Just found this thread and I am also triple positive grade one.

    I hope some of you see this—how did you respond to treatment? I had neoadjuvant chemo and herceptin/perjeta, and just had surgery and it looks like I didn’t really respond at all. I’m really disheartened.

  • BeachMom2018
    BeachMom2018 Member Posts: 15
    edited July 2018

    I am ER, PR, HER2+ grade 3 (poorly differentiated). stage 1 because tumor was 1.5cm. Two oncs gave me two different recommendations. both radiation and aromatase inhibitor, but one was TCH the the T+H. Need to decide which to go with and I have NO idea!!

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2018

    BeachMom2018, that's a really difficult position to be in! Did you tell each medical oncologist about the other's opinion, and ask why they are choosing their particular treatment? Treatment facilities often vary in their approach.


  • TYE89
    TYE89 Member Posts: 16
    edited July 2018

    Hi Everyone!

    I have been away from the board for a few weeks. I had my last reconstruction surgery with port removal on July 11th and my last Herceptin will be on Aug.7! WOOHOO!!! It feels so good to be free from that port! Like most of us, I have tried to read every word I could find about our crazy triple positive grade 1.

    Gingerobrien - how did your MO appointment go? When do you start treatment?

    ColleenS80 - I'm so sorry to hear your news...but do not be discouraged! We triple positive ladies have so much available to us & I am certain your MO will have a great plan for your next steps. Here is a link I found today that I think you would be interested in reading. As I have read before, I think the lever of your HER2+ ratio plays a part in your neoadjuvant response. What are your ER+ & PR+ percentages? If I were you, I would request a new HER2 test on the surgical speciman to see if the neoadjvant treatment changed that status.

    https://www.journalofclinicalpathways.com/article/breast-cancer-her2-status-conversion-after-neoadjuvant-chemo-guides-further-therapy

    BeachMom2018 - As Moderator said, each MO should be able to explain their reasoning behind their recommendation. I had TCHP, tumor was 1.6cm, with 1mm micromet in 1 node (5 nodes removed). I am at MDAnderson & did not have any neoadjuvant surgery. My surgeon felt with my case it was best have surgery first & I didn't really question her recommendation. My MO explained my treatment plan like this: 1) tumor above 2cm = Taxol + Herceptin for 12 weeks followed by 4 AC treatments, 2) tumor between 1-2cm = TCH and 3) tumor less than 1cm = 12 Taxol. Perjeta was added when the 1mm micromet was found on post surgical biopsy. Each persons treatment decision is so specific to their case...their cancer bio makeup, age, health, etc.

    Being at MDA, I did not question my treatment protocol. I wanted the book thrown at it & was willing to endure it. They did 3 HER2+ tests (all FISH). One from original biopsy, MDA did their own on the biopsy speciman & one on the post surgery speciman. My ratios were 2.0, 1.8 & 2.0 (my ER is 90%, PR is 90%). Looking back on everything, I wonder if this low ratio could have been the reason they wanted to do surgery vs neoadjuvant treatment.

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