dx ILC and IDC .confused

babybellebooboo
babybellebooboo Member Posts: 18
edited June 2014 in ILC (Invasive Lobular Carcinoma)
hi all
many thanks for all comforting and informative comments from my previous posts.now i'm confused and wonder if any of you can help me make sense of it all
first of all i am 43 ,premenipausal with no kids. i was told i had 2 tumours....one 42 mm and one 12 mm and one is IDC and one is ILC though i don't know which one is what.my doc also says i am er - and cannot have hormone treatment. i have a mascectomy on the 4th july and i asked him about taking off both my breasts but says he has no need to. i am really stressed out about this because i really don't want to through with this twice.do i trust the doc or can i insist on this.also what does being er- mean as far as treatment goes.if anyone can help i would really appreciate your views
regards karen
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  • nash
    nash Member Posts: 2,600
    edited November 2007

    Hi, Karen. To answer your questions:

    The decision to do a bilat mast is really up to you. The docs can advise you one way or the other, but it really comes down to what you are comfortable with. If you decide you want to do it and the surgeon won't comply, then you just need to find a different surgeon.

    As far as being ER-, are you also PR-? Sometimes hormonal therapy will work if you are ER-/PR+. But if you are ER-/PR -, then it means that your tumors won't respond to hormonal therapies like tamoxifen. 

    Are the docs absolutely certain that your ILC tumor is ER/PR negative? I ask b/c most ILC are ER/PR positive, so if your's isn't, that's pretty unusual. Not impossible, but definately not the norm for ILC. 

    Are your HER2+? Most ILC is HER2 -, but IDC is HER2+ in about 30% of the cases. If you are HER2 +, then you can be treated with Herceptin.

    If you are truly triple negative (ER/PR/HER2 all negative), then your only systemic treatment option is chemo. 

    Hope that helps a bit.

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