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Anyone else Lobular and her2 positive?

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scarecrow20
scarecrow20 Member Posts: 6

Hi, hope everyone is well.

I was diagnosed in January this year and this is my first post. I can’t seem to find many people that also have ILC cancer and that are her2 positive and I have been searching for survivors for reassurance 🤞

I have a large tumor which was reduced to 3cm after chemo. My MO Is waiting for Her2 results from histology to check if I should now receive Kadcyla. Then it is RT and Tamoxifen.

I check online and I do not see anything good regarding her2 positive ILC large tumor with lymph node involvement and would love to hear from survivors please. Seems that ILC can normally return many years later but with her2 positive it is likely to be within 2 years?

Trying to keep positive as 47 and want many more years with my lovely family! Thank you !


Comments

  • InfusionConfusion
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    I'm lobular and her2+, had a large tumor (10cm+) and 4 lymph nodes (age 43 at dx). I was diagnosed last year in May but my symptoms started at least 10 months before. It is unusual but I was told even though lobular is slow growing, the her2 makes it faster. I don't know what survival rates are for our specific case but I'm hoping to post back here in a few years saying it's all good! I had all the treatment they could give me. I hope we get some responses here from long term survivors but regardless we should stay positive.

  • scarecrow20
    scarecrow20 Member Posts: 6
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    Thanks for posting infusionconfusion...hopefully we we will receive some more responses and write our own in a few years, as you say! All the best

  • Flnana2
    Flnana2 Member Posts: 102
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    I am ILC and triple positive. I am just 15 months into this journey but plan on being around for a while. I’ve had TCPH, double mastectomy, radiation, Kadcyla and continue on letrazole for 10 years. Hopefully that is enough to keep this monster at bay.

  • Colholly
    Colholly Member Posts: 7
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    I’ve just been diagnosed with lobular cancel a few weeks ago but I don’t know what her2 is so will have to find out !

  • moderators
    moderators Posts: 8,285
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    Colholly, welcome to Breastcancer.org! We're sorry that you have to be here, but glad you found us!

    We're sure some other members will be around soon to offer some insight and information but, in the mean time, you might find this article helpful: HER2 Status

    Also, we wanted to suggest suggest that you fill out your diagnosis and treatment information on your profile so that other members can easily know your situation and answer your questions.

    We hope this helps! We look forward to hearing more from you soon!

    The Mods

  • scarecrow20
    scarecrow20 Member Posts: 6
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    Sorry to hear of your diagnosis colholly...a few weeks after my biopsy I was told what receptors my breast cancer had, for example my cancer is ER positive PR positive and Her2 Positive and the oncologist needs this information so that they can confirm which treatments/drugs will be best for you

  • Colholly
    Colholly Member Posts: 7
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    Hi Scarecrow

    Good to hear from you.

    just been to see the surgeon who has explained the receptors, HER2 and the bilateral mastectomy op which I should have in next 2 weeks.

    How did you op go?

  • FunShine
    FunShine Member Posts: 1
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    Hi everyone, it's nice to meet you all. Hi Colholly, I hope your surgery went well. I was diagnosed last year with triple positive ILC. My profile looks a lot like InfusionConfusion . I had chemo and targeted therapy, then DMX, then rads, then just finished my targeted therapy and and facing a delayed DIEP flap reconstruction on this coming Friday the 13th. I hope you are all doing well. I've never found anyone who had triple positive ILC, so it's nice to know I'm not alone.

  • scarecrow20
    scarecrow20 Member Posts: 6
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    coholly and Funshine - sorry for delay in posting... hope your ops went well 🤞 Unfortunately I had a haematoma and second op tho fine after this. I was not offered an immediate reconstruction.interestingly, my residual tumor did not have her2 so looks like herceptin and perjeta worked. Breast cancer is v confusing! So still on herceptin and perjeta rather than kadcyla.

  • naps
    naps Member Posts: 27
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    Hello,

    In early 2016, I was diagnosed with PILC--no hormone receptor positivity but was HER 2+ initially (this also was no longer seen in residual). I still had a full course of Herceptin and Perjeta. I am continuing to do very well. Best wishes to you! Hang in there.

  • scarecrow20
    scarecrow20 Member Posts: 6
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    Hi Naps, that is so good to hear! Thank you for taking the time to post 🙂 best wishes to you too

  • GermanshepherdsR4me
    GermanshepherdsR4me Member Posts: 9
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    Hello, I am new here. My core biopsy came back triple positive ILC. I have IBC (inflammatory breast cancer.) I have not had a mastectomy yet. I will do chemo, surgery then radiation. I will finally, hopefully, get my treatment plan and start chemo on Thursday June 17th.

  • scarecrow20
    scarecrow20 Member Posts: 6
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    GermanshepherdsRme - Hope everything goes well for you

  • GermanshepherdsR4me
    GermanshepherdsR4me Member Posts: 9
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    Thank you

    Happy