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Long term luminal b survivors!?

Swko
Swko Member Posts: 1

hi just found out I am luminal b. I am her 2 negative er 99% pr 30%. My mammaprint stated I am high risk at 29% chance of recurrence but endocrine therapy and chemo would bring it down to 5 percent so I guess that's decent Anyone else with a similar situation? Any words of encouragement would be great!

Comments

  • Natural
    Natural Member Posts: 5
    edited February 2020

    Did your MO review the Mammaprint with you? I was shocked when I got my results a few days ago for high risk luminal B. The first page of the report is very misleading. I am fortunate to have found a contact with an Agendia print who provided explanation. Are you clinically low risk??

  • HeartShapedBox
    HeartShapedBox Member Posts: 117
    edited February 2020

    it's important to remember that luminal b is THE most common subgroup @ 40%, and that it's only one piece of your puzzle of factors that can put you at higher or lower risk of recurrence. Yes as a factor in and of itself weighed against non-luminal patients it's associated with poorer long term prognosis in terms of local recurrence and metastasis, but there are MANY other factors (type of breast cancer, size and grade of tumor, HER2 and hormone status, nodal involvement, not to mention treatments) that make up the whole picture of risk.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53231...


  • Natural
    Natural Member Posts: 5
    edited February 2020

    But what if clinical / path report doesn't fit luminal B? I am hormone positive with estrogen at 99% and progesterone 80+ % (I'd have to look up), her2 neg per FISH. Ki67 is 8%. My path report is grade 1. Tubular is 3 and the other two factors are 1 including mitosis. I really don't understand when all clinical factors that I am aware for luminal B do not fit. The mammaprint was from the surgical bx. I had core needle vacuum bx for initial bx. Small tumor measured 6 mm on the original US's. MRI after that did not show any tumors. Experienced radiologist said the marker was the only way she found the bx site. Two US's preparing for sentinel node did not show any growth. BS said there was cancer in the surgical bx but where did 9 mm come from? All margins negative,tissue removed from bilateral reduction negative, and 2 sentinel lymph nodes negative. Wondering if mammaprint accurate? Of course we all want to see what we expect / hope. My BS says has never seen stage 1 with high mammaprint. Lots of questions for upcoming appt with MO. I appreciate the article and will read closely. I, like many of us, am becoming a wealth of knowledge re breast cancer. Thank you






  • Cricketdog
    Cricketdog Member Posts: 48
    edited February 2020

    Swko - my results were very similar to yours - luminal B and E+ and P+ with high risk Mammaprint score of 29%. Did you start any treatment? I started TC 2 weeks ago.

    Natural - I was stage 1 as well (1.8 cm mass) and Mammaprint high risk. My MO was not overly surprised with my results. He worked for Agendia years ago. He stopped testing already high risk patients with Mammaprint some time ago because the scores come back so high that it's really disheartening for patients.

  • Natural
    Natural Member Posts: 5
    edited February 2020

    I am first seeing the MO in a couple of weeks as visiting family. My only plan was low dose tamoxifen. After connecting with an agendia rep, i found out the front page of the report is an aggregate for all high risks. Since i am low risk clinically, the advantage of chemo is 2.5%. With toxicity of chemo of abt 2%, no to chemo. I am also 65 with grown children and a loving husband who accepts my decision making. There is a study regarding discordant reports. 9% are low clinical, high Mammaprint. The rep sent info. Kept me from freaking out since my BS had never seen a stage 1, grade 1 as high risk and didn’t know how to interpret. I am still not confident about the mammoprint results.

  • loomisgal
    loomisgal Member Posts: 9
    edited November 2021

    I am having the same issue and feeling very lost. I know this post was along time ago but do you still have that report? I spoke with Mammaprint pathologist who only added to my fear with the high risk score. I was Grade 2. My oncologist doesn't know how t interpret either.