Joining the party

Coffee-lover
Coffee-lover Member Posts: 47
edited May 2016 in ILC (Invasive Lobular Carcinoma)

i was diagnosed in march with a small >2cm tumor in left breast. All imaging indicated it was very small and contained. That all changed when lumpectomy found over 8cm tumor and 4 involved lymph nodes. One had lymphovascular involvement (not sure what that exactly means).

So bilateral mastectomy last wed with chemo and radiation to come. Im ER positive so taking letrozole.

Insuance has denied a pet scan stating that stage 3 is established. Since i dont have any symptoms anywhere else, theres no reason to look. Not sure how i feel about that.

Right now, im focused on healing so i can start the next phase. Ive been following the posts and would like to contribute and ask questions.

Thanks for listening.

Valerie

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2016

    Hi Valerie!

    I was diagnosed at Stage IIIA, too. My initial ultrasound underestimated the size of my cancer as well. There's nothing like finding out that things are worse than expected! I did get a PET scan, though, to establish a baseline for neoadjuvant chemo. (After neoadjuvant chemo, we did another PET scan which showed that the cancer was all gone.) What chemo will you be doing? I did AC + Taxol.

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  • Coffee-lover
    Coffee-lover Member Posts: 47
    edited May 2016

    doxorubicin, cyclophosphamide and paclitaxil. The paclitaxil has been denied by ins co so that one may change. Ive been told to expect 5 months of chemo followed by radiation.

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  • kar123
    kar123 Member Posts: 273
    edited May 2016

    Sorry you are joining the party, but you've come to the right one! Love your user name! I had a very large tumor also. It was a shock. I'll be 6 years from dx in June. It's a long road, but you'll get there.

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  • damaxx
    damaxx Member Posts: 7
    edited May 2016

    Hi - I have also recently joined. Just met my MO Friday and will be starting chemo on June 10th. My surgery will not be until September or October. Hoping you have a fast recovery.

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  • Coffee-lover
    Coffee-lover Member Posts: 47
    edited May 2016

    The different protocols are fascinating. My medical team has been steadfast in recommending surgery first. I've noticed that a number of people have chemo and/or radiation first.

    I refuse to let fear rule me but have to admit that I worry about recurrence or if its already spread. My surgeon characterizes lobular as the crazy uncle, you just don't know where he'll show up next. My naturopath is encouraging me to question the oncologist on if the chemo drugs truly work on lobular. Lobular is either unpredictable or the medical community doesn't agree with treatment. Can someone point me to research on valid treatments?

    Thank you.

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