30 of 31 nodes positive

ductal
ductal Member Posts: 65
edited June 2014 in ILC (Invasive Lobular Carcinoma)
30 of 31 nodes positive
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  • ductal
    ductal Member Posts: 65
    edited June 2012

    Hi, could anyone tell me if they have ever heard of anyone with this many positive nodes?  Also, never missed a mammo, they estimate I had it over 10 years.  They did mastectomy and removed breast with tumor, only to find a 5 inch grapefruit sized tumor deep within armpit.  Had to cut my muscles, leaving arm useless except to get lymphadema.  Lots more.  I really want to know if anyone in the world has had 30 lymph nodes pos?  That was 2009, and I have bone mets in 7 places now, hoping for more time to raise daughter.  Thanks!

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  • ductal
    ductal Member Posts: 65
    edited June 2012

    PS.  I am listed as ductal because of brain mush.  Haha.  I have stage 4 ILC.

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  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    I am so sorry, that must have been a hellish recovery. My SIL had about that many nodes, 15 years ago.



    Are your bone mets holding steady? As far as I can understand, you can often keep bone mets under control a very long time.

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  • barsco1963
    barsco1963 Member Posts: 2,119
    edited June 2012

    Hi ductal - I had 29 nodes removed with 21 being positive. I had been having yearly mammos for about 10 yrs prior to my dx. Liver mets were detected shortly afterwards bringing me to stage IV in a hurry. I can't say for sure how long the cancer was there but being what it is, it can lurk for years before appearing with a vengeance.

    I don't have bone mets, but I do know that many here do and have been able to live a good QOL for many years. Hopefully your tx will zap the mets to smithereens. It is quite possible that you will have many, many good years with your daughter yet.

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  • amlg1
    amlg1 Member Posts: 596
    edited June 2012

    I had 34 nodes removed,31 pos.That was 3 years ago.I know how you feel,because when I heard all of those nodes

    ,I was freaking out.I also went every year for 22 years for a mammo.

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  • ductal
    ductal Member Posts: 65
    edited June 2012

    OMG!  Thank you so much ladies.  I am very strong, but almost cried reading your posts.  I will try to keep hopeful.  One of my 7 is in skull between skull and brain.  I saw diagnosis listed as bone mets and soft tissue mets.  They never mentioned soft tissue mets, hope that is the one in head and not another.  I'll be asking questions weds.   Amig, are you feeling ok now?  So nice to know of you, but sorry for you.  Barsco, are you doing ok with liver mets?  I didn't know that was possible.  Thanks for saying something about my angel (daughter)...she worries so.  I want her to be a kid but it has been one thing after another, you all know. Momine, yeah, I don't think I will ever recover, I am concave, deformed, etc. but I am here, huh!  I just started faslodex for bone mets 2 weeks ago, who knows if it will work.  Don't know how long I've had them.  Had 3 unsuccessful biopsies (pelvis, 2 in humerus)..didn't provide results so we are guessing my cells haven't changed.  If it gets worse or if tumor markers go up, will change course.  Like a shot in the dark!  Thanks again, ladies.  You all take care.

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  • rakulynda
    rakulynda Member Posts: 286
    edited June 2012

    I too am ILC and 9 years ago dx with 0/1 node, stage 1 and was told back then after mastec, chemo and reconstruction by 2 (!!!) oncologists that I was "cured". Fast forward 9 years of being cancer free and amost 2 years ago was found to have innumerable mets to bones, peritoneum and extensively throughout stomach. As ILC tends to show up in out of the ordinary places, listen to your body and intuition. My QOL has been very good besides the usual side effects from chemo. Wishing your treatment plan knocks those fu*%@#s to outer space! Hugs.

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  • ductal
    ductal Member Posts: 65
    edited June 2012

    rakulynda, that sounds so disheartening and painful.  Thanks for sharing.  Thoughts your way.  I have a feeling if we listed half of the diagnoses and torture during our journeys, the site would crash!:)  That darn lobular.  Congrats on 9 years, sorry about current crap.  Are u in tx?  R u ok daily?  You take care.

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  • overjoyed4life
    overjoyed4life Member Posts: 239
    edited June 2012

    22/29 nodes positive here.

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  • Ihopeg
    Ihopeg Member Posts: 399
    edited June 2012

    19/20 nodes positive here

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  • Ihopeg
    Ihopeg Member Posts: 399
    edited June 2012

    20/21 nodes positve here

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