WAS ILC now 0 receptors - is this Triple N Lob mets in bone?

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Lily55
Lily55 Member Posts: 3,534
edited March 2019 in Stage IV/Metastatic Breast Cancer ONLY

Even the title sounds confusing.....my diagnosis is recurrence of invasive lobular cancer in the bones, specifically back bones where I had 3 fractured vertebra one of which required neuro surgery as it created a bulging spinal column on back wall.....I am now classed as Stage 4 incurable....not sure why they have to add the last word......

However I am NEGATIVE for all receptors including Herceptin so does this mean for treatment purposes I am effectively TN? Not sure what difference it makes

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  • EV11
    EV11 Member Posts: 127
    edited March 2019

    Lilly55- Technically, those results do indicate that you are triple negative....but it can be difficult to get a reliable IHC (ER/PR) from bone tissue. It is very uncommon, although not unheard of, for lobular breast cancer to be TN. Do you know your original ER/PR%? IF not very highly + (ER especially) than it is more likely that your cancer has evolved to lose receptors.

    If this is indeed the case, your treatment options would include chemo, and immunotherapy, and depending on which other genomic alterations you have, other treatments like PARP inhibitors if BRCA+, etc.

    Can you get a second opinion pathology testing on your bone tissue? And perhaps consider a liquid biopsy through Foundation One or Guardant 360 to help identify any genomic alterations you might have?

    Whatever the results, I'm sorry you got this diagnosis, and hope you and your oncologist settle on a treatment plan soon.

    Elizabeth

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2019

    Hi Elizabeth, thank you for your reply, yes, it was 98% ER positive and 92% PR positive 7 years ago.....

    The Oncologist said they could not get any receptors at all and treatment plan is weekly Paclitaxel........she says that is the only thing that will work and that I will continue to get worse fast if I don´t do it....which I do know is accurate as this has come back aggressively and I am only coping with the pain as I am full of Fentanyl.....patches and rescue medication

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2019

    Oh Lily55, so sorry to hear this news. Have they talked about radiation? Maybe a second opinion as EV11 suggests.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2019

    Lily, let us know how the chemo is working, hopefully the pain will ease soon.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2019

    I have had radiotherapy, a one hit special session, lasted 40 minutes at high levels....will try and post when I find the report....that did help.......

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