Percentage of ILC spreading to the other breast

SusanB12
SusanB12 Member Posts: 54
edited June 2014 in ILC (Invasive Lobular Carcinoma)
Does anyone know the percentage of ILC spreading to the other breast? I am awaiting surgery on the left side and just had a biopsy for suspicious spots on the right side and am waiting for those results. Should know today or tommorrow. Do not know how to make the decision of having a unilateral or bilaterl? Maybe my decision will be made for me.
thanks.
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  • wallycat
    wallycat Member Posts: 3,227
    edited August 2007
    I also opted for bilateral because I'm a nervous-nel type.
    That and the uni-boob would be harder to dress for me as I did not want to wear forms/pros., which I would almost have to most of the time.
    I figured if I get cancer, I can have the benefit of NO MORE BRAS!!

    I thought the % was 30, but maybe that was in my head.
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  • marshakb
    marshakb Member Posts: 1,664
    edited August 2007

    I have read new reports that say anywhere from 20-29%. I'll see if I can find that and post the link. Marsha

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  • bean4865
    bean4865 Member Posts: 64
    edited November 2007

    Hi Susan,

    My radiologist said that chances of going to other breast was only .6%. I am seeing oncologist on Dec. 11 and will ask him too but my surgery is scheduled for Dec 13. Not sure what I will do either.

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  • SLH
    SLH Member Posts: 566
    edited November 2007

    I had many reasons for choosing a bilateral, even though the ILC and LCIS were only in one breast. One reason was that before the cancer was miraculously found at stage 1 in my left breast, I'd had one lump removed and two others biopsied in my "good" breast.  After my bilateral, the report said that my right breast was cancer-free, but there were 5 solid benign lumps.  To go through the worry, the needle biopsies and the waiting would have been very stressful.

    sally 

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  • gracejon
    gracejon Member Posts: 972
    edited November 2007

    I had a bilateral and although my other breast did not have any cancer, it did have ALH, ADH and every quadrant(four) had LCIS.  I have seen studies that say this does not increase one's risk of invasive cancer but I am glad I chose the bilateral and will never look back.  Of course this does not completely eradicate the risk of breast cancer since some breast tissue will remain, it does give me personally greater peace of mind.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    I have always heard the 30% risk for the other breast when ILC is found.  Gracejon--ADH/ALH reportedly increases your risk 3 to 5x; LCIS increases your risk dramatically--7 to 10x.

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  • LynnW
    LynnW Member Posts: 191
    edited November 2007

    Hi Susan,

    I had a bilateral for what they thought was ILC as thats what I had on the right side,, but after pathology it turned out to be Ductal with lobular features on that side.  Not sure of the statistics but the doctor assured me it didn't meant the cancer was twice as bad,,, Lobular can do this and thats the fact that you have to acknowledge.  I could have saved the left breast but didn't want to worry year after year about further mamographies... etc. Its a personal choice. Best of luck.

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  • biondi
    biondi Member Posts: 223
    edited November 2007

    I HEARD 20 TO 30% INCREASE OF RISK WITH ILC GOING TO THE OTHER BREAST. SO I OPTED FOR BILATERAL. VERY HAPPY WITH MY DECISION.

    GOOD LUCK WITH YOUR SURGERY...NO MORE MAMOS!! YEA. 

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  • CPT
    CPT Member Posts: 10
    edited December 2007

    Opted for bilateral because of risk of recurrence in other breast. Had surgery, and 3/18 nodes positive. I was under impression that with the bilateral, no need for hormone therapy, but my onc says I still need it. Any of you have any opinions about this?

    Christine 

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  • moonie
    moonie Member Posts: 194
    edited December 2007

    In the study below....it sounds like it was more like 3 %:

    http://www.blackwell-synergy.com/doi/abs/10.1111/j.1524-4741.1997.tb00133.x?cookieSet=1&journalCode=tbj

    and around 6 % in this study:

    http://www.annalssurgicaloncology.org/cgi/content/abstract/4/7/545

    This one says 20-29%:

    http://breast-cancer-research.com/content/6/3/R149

    I am beginning to think noone really knows.  Likely, part of the problem is that until recently, not very many studies were done treating Lobular as a 'separate' disease.  It would seem there should also be new studies that compare how much taking Tamoxifen or an AI will reduce that risk.  Since the AIs haven't been used for very many years, it is difficult at this point to determine what the 'real' risk of it showing up is contralaterally.

    I opted for unilateral (4 years ago) and am very happy with my decision.

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