Tamoxifen Failure and ILC

nowords
nowords Member Posts: 423
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Do you have ILC and have a recurrence or mets while on Tamoxifen?

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  • susaloh
    susaloh Member Posts: 103
    edited April 2010

    Yes, I do (see my signature), why are you asking?

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  • susaloh
    susaloh Member Posts: 103
    edited April 2010

    yes, I do (see my signature), why are you asking?

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  • Hood1980
    Hood1980 Member Posts: 537
    edited April 2010

    I don't know why nowords is asking, but first let me say I'm sorry that the cancer bi%@$ has returned to you susaloh!  I'd like to know more.  You look very young.  How old were you at diagnosis.  You had a large tumor.  Was there a pathology work up?  ER/PR + or -,  Her+?  Grad & Class of tumor?  What chemo regimen originally?  How are you doing on the new chemo?  How many treatment will you have?  Any additional surgeries?

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  • nowords
    nowords Member Posts: 423
    edited April 2010

    I asked because I am currently taking tamoxifen and I had a very large tumor 10.6 x 8.4 x 4.1 cm with 7 of 22 positive nodes and extra nodal extension.I am one year from diagnosis. I have noticed some thickening in the remaining breast. The MRI and PET post surgery (July 09) showed only small calcification in an area not near this new thickening. I also have swelling and pain in lymph nodes under my "good" arm. I am scheduled for follow  up appointment in May. My rads Doc. thought that I would most likely see bone mets ten years down the road...the surgeon thought I may have two years before I see mets- until my PET came back clean and then he thought maybe longer....I do not like the tamoxifen,though my side effects are diminishing and fear the aromatase inhibitor side effects more...I read about tamoxifen failing ILC and wondered if there were many on the BC.org pages who had mets while on tamoxifen...I know there is not one drug that works for all, and I am doing well all things considered...but I guess a part of me would like to think that taking this is worth it....

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  • JennyB100104
    JennyB100104 Member Posts: 237
    edited April 2010

    nowords, I'm new here and definitely not as experienced/well researched as many of you, but I read the Tam+ILC study posted on these boards and forwarded it to my doctor. He responded with another study showing ILC patients' response to Tamoxifen. It showed that those with a moderate prognosis (and poor? I haven't had time to read it all) fared worse than IDC patients after several years when not on Tam and better than IDC patients when on Tam. It looks to me like Tamoxifen definitely leads to marked improvement in overall prognosis.

    If you want me to send you a copy of the study, I'd be happy to. Feel free to send me a PM with your email address.

    And I hope and pray you don't have mets & the thickening is nothing.

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