Any ILC veterans who did chemo because of high oncotype/Ki67?

Steff66
Steff66 Member Posts: 33
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Dear all, I wonder if you could give me some faith in what I am doing now. I had small ILC tumor, no lymph node involvement, but a very high Ki67 score. Here in Norway medical care is state driven which spares you expenses, but you have only the right to one second opinion! There are no private cancer clinics. So against the two oncologists I spoke to I opted for chemo (FEC 60 x 6). St. Gallen confernce experts this year have expressed that chemo does not work for ILC, but at the same time recommend chemo for all with Ki67 higher than 14. Oncotype tests are not done in Norway. I have recently asked a similiar question and I hope you do not feel I am spamming you. But right now I would love to hear from ILC women with high scores who did chemo and are doing fine... I feel with this non-classical ILC I have (usually it has very low Ki67) I am falling through all the cracks in the treatment system. Any advise or encouragement is appreciated! Hugs to all of you and be well!!!

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Comments

  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2011

    Interesting question, Steff.  I don't have any input, but thought I'd stop and bump your thread in the hopes that others will.    Deanna

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  • Steff66
    Steff66 Member Posts: 33
    edited June 2011

    Thank you, Deanna. I do appreciate it. Hugs from me, Steff

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited June 2011

    I just had a look at my pathology report and there is no mention of Ki67 score at all. However, I was her2+ve (and got the highest grade score possible) which really takes over with regards to treatment options.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited June 2011

    i don't know what the Ki67 score is...but I had chemo....no oncotype test due to positive nodes.....but I am 5 years from Dx.....bilat, chemo, rads, ooph, and AI's.....

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  • JennyB100104
    JennyB100104 Member Posts: 237
    edited June 2011

    I didn't have a Ki-67 test done, but for a variety of reasons, I opted for chemo. I had TCx4 a year ago, and I'm doing fine. I *finally* feel like I've gotten most of that poison out of my system.

    I think making the blanket statement, "Chemo does not work on ILC," is very wrong! It might be true that it doesn't work on many ILCs, but surely it works on some, especially on the more aggressive ones.

    Anyway, good luck to you.

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  • CML0310
    CML0310 Member Posts: 75
    edited June 2011

    Steff66 I am waiting on my Onco Type as we speak.  My MO inidcated that since ILC is usually heavily hormonal based for the lower grades the hormonal therapy significantly helps the cause. If I get a low score i can avoid chemo, anything else and i need to do the protocol.   I also agree with what JennyB said.   What is the Ki67?

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2011

    Steff

    I dont' know my Ki67 score-we used the oncotype and my score, with no nodes, clear margins was 27-which,at the time, was considered intermediate.  Did 4 tx of chemo and radiation and hormonal therapy-- Other than some nagging joint stiffness, I am fine and am confident that I made the right decision at the time with the info that I had.  best of luck

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