Am I the only ILC Triple Negative Breast Cancer person here

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Numb
Numb Member Posts: 432

I can't believe how rare my type of breast cancer seems to be.  I have not found one other person on this site with the same diagnosis as me.  

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    Hi Numb! Yes, it's true that this type of cancer is not common. Do you know CinderellaNC? Looks like she has triple negative ILC too, as you can read in the following topic: Topic: Any triple negative ILC out there?

    The Mods

  • Numb
    Numb Member Posts: 432
    edited May 2016

    Thank you Moderators, I will get in touch with Cinderella.

  • lightseeker
    lightseeker Member Posts: 58
    edited July 2017

    Hi,

    I have been diagnosed with ILC (Pleomorphic), triple negative. My tumor is about 4 cm; the care plan includes neoadjuvant chemo (ACT, 4x, followed by 12x Taxol, with possible Carboplatin). I just had the port placed today; the chemo starts next week.

    I'm very sad and scared.

    Eve

  • MyJourneys
    MyJourneys Member Posts: 143
    edited July 2017

    I have ILC hormone positive on one side, and ILC triple negative on the other. How's that for rare? I always was an overachiever! ;)

  • Nurseinboots
    Nurseinboots Member Posts: 19
    edited October 2017

    hey lightseeker... I’m in that boat with you. You never want to be interesting from a medical standpoint, but here we are.

    I did neoadjuvant chemo under a phase II clinical trial. AC - T but with Doxil (doxorubicin, but sort of an extended release version, and not as rough) and carboplatin. I had a big palpable mass that resolved nicely on clinical exam during chemo. So everyone was very happy. But the pre op MRI showed a lot of tumor left, and ln involvement, so off I went for the unilateral mx with axillary dissection.

    I got disenrolled from the clinical trial because of the disappointing response to chemo - they were looking for PCR. So I got transferred to another oncologist and we rechecked hormone receptor status just to be sure. I’m meeting with her again next week, and depending on HER-2 results, we’ll make a plan for adjuvant chemo. She doesn’t want to do the Taxol, she wants something more aggressive.

    I’m also sad and scared at times. I started Wellbutrin, and it has helped. Now, even when I’m low, I see a way forward- I lost that perspective fo a while. Trying to work out getting some therapy as well.

    I hope you are doing well.

  • lightseeker
    lightseeker Member Posts: 58
    edited October 2017

    Hi

    Nurseinboots - this is definitely a rollercoaster of emotion :( Thanks for your info. I was just told that if I don't get complete response from chemo that I'd be a candidate for xeloda bec I am triple negative.

    I just graduated Nursing School (at 50). Passed NCLEX before starting chemo (studied one day) Not sure if and when I will get to work with patients due to immunosuppression - this bums me out too.

    Thanks,

    Eve

  • Nurseinboots
    Nurseinboots Member Posts: 19
    edited October 2017

    Eve, congratulations and welcome to nursing! That’s a great accomplishment.

  • Nurseinboots
    Nurseinboots Member Posts: 19
    edited October 2017

    MyJourneys, I hope you’re getting excellent care and doing well with your dual citizenship, so to speak!

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