Waiting for Oncotype Dx results - Grade 3 Pleomorphic ILC

PleomorphicPeony
PleomorphicPeony Member Posts: 4
edited September 2017 in ILC (Invasive Lobular Carcinoma)

After a few delays I was diagnosed with Pleomorphic ILC in early July, then had a lumpectomy a few weeks later. Since the HER2 (FISH) on my biopsy was equivocal, the HER2 (FISH) was repeated on the tumor after my lumpectomy, which resulted in a delay in sending my Oncotype until the repeat HER2 (FISH) came back as negative.

Now I'm waiting for the Oncotype results, which were supposed to have been available last week. I have another tentative appointment scheduled for tomorrow with my Oncologist to go over the results. If the results aren't available tomorrow, I'll apparently have to wait until next week for an appointment to get the results. Tomorrow marks 6 weeks since my surgery.

Makes me think of the Tom Petty song "The waiting is the hardest part"...

I have been so grateful to have discovered this community! Reading other's experiences and the support the community provides has been very helpful to me.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2017

    PleomorphicPeony-

    We just wanted to extend a warm welcome to you! We're sorry you find yourself here, but we're so glad you've joined us. We know, the waiting is one of the hardest parts. But just know that you're not alone, and we're all here for you! Please keep us posted on your oncotype score, we have several threads that might be of interest to you once you have that and are wondering how to proceed.

    The Mods

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  • Optimist52
    Optimist52 Member Posts: 302
    edited September 2017

    Hi, I was also diagnosed with pleomorphic ILC two years ago (12 years after first ILC). My Oncotype DX result came back as 22, my MO was certain that chemo wasn't necessary. I've read a few articles online about it and in general it seems that it doesn't have a worse prognosis than classic ILC, although initially I did read some scary stuff on Google. Sorry that you've had to wait so long for results, it's not fair on top of everything else you're going through.

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  • PleomorphicPeony
    PleomorphicPeony Member Posts: 4
    edited September 2017

    Thank you for the warm welcome! I'll keep you posted on my Oncotype results. There apparently was a breakdown in communications somewhere between my Dr's office, Genomic Health and my insurance company regarding the required forms for the pre-authorization, so, the wait continues... (sigh) I plan to plead with the insurance company tomorrow to expedite approval of the pre-authorization.

    I'm nervous & scared because the clock is ticking on the time from my surgery to starting treatment. Hopefully there is still time for me to get the results this week, I'm not sure I can wait yet another weekend.

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  • PleomorphicPeony
    PleomorphicPeony Member Posts: 4
    edited September 2017

    Hi Optimist52,

    I appreciate your reply and hearing the Oncotype DX result from a fellow PILC'r. Thank you for the support and encouraging words!

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  • PleomorphicPeony
    PleomorphicPeony Member Posts: 4
    edited September 2017

    I met with my MO on Friday and got some good news and some bad news... Good news - my Oncotype score was 17. Bad news - they are recommending that I have HER2 targeted therapy (Herceptin) combined with Taxol (a.k.a. the Tolaney regimen). My MO presented my case to the institution's breast conference in late Aug. and consulted with them again once my Oncotype results were available. Given my grade 3 tumor and the equivocal HER2 FISH results on my biopsy, they all apparently consider my tumor to be HER2 elevated (HER@/SMS ratio was 2.5, which is considered positive, and HER2 signals/nucleus was 4.5, which is equivocal) and are recommending the Tolaney regimen.

    I had a baseline echo cardiogram done on Friday (which is apparently required before, during and after Herceptin therapy) and will have a port placed on Tuesday prior to starting chemo on Wed.

    If you have any suggestions for threads to read I would really appreciate it!

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  • Optimist52
    Optimist52 Member Posts: 302
    edited September 2017

    Hi Pleo, that's good news in general that your Oncotype was in the low category. I understand that with HER2+ that chemo is necessary. There is a triple positive thread and many chemo threads that will be helpful to you. Hope it all goes as well as possible for you.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2017

    I wonder why they never seem to go with herceptin alone?

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