IDC is actually ILC- pathology back

Blueorange
Blueorange Member Posts: 76
edited October 2016 in ILC (Invasive Lobular Carcinoma)

hi,

I was diagnosed with incase ductal carcinoma, but I just got the pathology results from my blx and it's actually invasive lobular carcinoma. I have not yet researched this...

Saying hi really...

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  • Numb
    Numb Member Posts: 432
    edited October 2016

    I was originally diagnosed ILC and then it changed to IDC and then changed back again to ILC, and now my Oncologist says I have ILC but it is behaving like IDC.   So figure that one out if you can !!!

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  • alma1947a
    alma1947a Member Posts: 4
    edited October 2016

    I think I would want a second opionion. Good luck with that. I am going back for more surgery in a few weeks for cancer that was missed during left mastectomy.

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  • alma1947a
    alma1947a Member Posts: 4
    edited October 2016

    I have done so much research on this as I have diagnosed with the the same. There's a test out there that they do when u see your oncologist that rates you by number and gives you something like the odds of it coming back. I forget the word for it, but your dr will know and I suggest having it done.

    In my case I came back a number 18 and I border on it not likely to come back somewhere else etc. I am on estrogen med..Letrozole.

    I have a hunch if you ask a lot of questions and find options that you feel will work better for you...all will be just fine.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2016

    You’re thinking of OncotypeDX. It is done on a specimen of the tumor removed during your surgery. 0-17: low risk of recurrence, low chance of benefit from chemo. 18-30: intermediate risk of recurrence and chance of benefit from chemo. Decision depends on other factors (age, menstrual status, comorbidities, how high in that “gray area” the score is). Increasingly, the Mammaprint or Prosigna tests are ordered for scores between 18-25 or so—and those tests give only low or high risk results, no intermediate. 31 and over: high risk of recurrence, high likelihood of benefit from chemo.

    It costs $4800 “retail.” In the U.S., insurance & Medicare pay for it. UK NHS does too. Situation’s a bit hazier in Canada and Australia.

    My score was 16, still in “low risk," so no chemo for me.

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  • tatatootsie62
    tatatootsie62 Member Posts: 86
    edited October 2016

    Hi blueorange, tatatootsie62 here. I have recently been diagnosed with ILC, multiple lesions

    in right breast, ER+, Pr+ and Her2-. My surgeon did not rely on the mammograms and ultrasound

    so he ordered an MRI and I am so glad that he did, otherwise the smaller multiple lesions in the

    same breast would not have been found until surgery.(?possibly) I'm scheduled for bilateral mastectomy on

    Nov 1st and I hope that I never have to deal with this again and never have any kind of recurrence. I hope that

    you are doing well after your surgerie(s). But let me tell you this; the more informed you

    are, the more reputable knowledge you have of the issue and the nature of this"horrible

    beast". ( ILC breast cancer), the better you are off about making informed decisions about

    your care with your surgeons and oncologist....together; and I feel that is an important key,

    TOGETHER ! Your family included because I am here to tell you that if affects everyone. The best

    to you today and in the future. HUGS

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