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Laura_Jean
Laura_Jean Member Posts: 48
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi all:

I've just found this board. I was diagnosed 12/16/10 with IBC, did 6 months of chemo (Taxol followed by FEC), right breast mascetomy 7/11/11, 26/41 nodes positive, Grade III.

Have been feeling VERY discouraged since pathology report from surgery. Any positive thoughts from anyone?

Laura Jean 

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  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited September 2011

    Laura Jean....

    Hi and I am sorry you are here but, there is great comfort and information here from those that have been through a similar situation...I am a stage iv and I had 5 out of 25 nodes positive when initially dx'd years ago.  I did the chemo and enjoyed over 10 wonderful cancer free years.  It came back in 2009 only in the bones - got stable but now having a bump in the road but this is stage iv.

    I am sure someone will come along to lift up your spirits with a more similar diagnosis - I just wanted to let you know how glad I am that you did find us - without this board, I would be a mess! 

    Hugs to you

    LowRider

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  • anonymice
    anonymice Member Posts: 532
    edited September 2011

    I'm so sorry, Laura Jean, to welcome you to the "club".  It is discouraging to find active cells in your lymph nodes, but not at all unusual and definitely doesn't mean you won't find a treatment that kicks your cancer's butt to the curb.  It it a hurdle, but not an impasse.

    You might want to get a second opinion about your treatment options at one of the two IBC centers in the country, MD Anderson and Fox Chase (TX and PA, respectively). 

    Hugs,

    Pam 

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  • Laura_Jean
    Laura_Jean Member Posts: 48
    edited September 2011

    Thanks for your replies.

    Forgot to mention that I am being treated at Fox Chase Cancer Center by Dr. Cristafenelli.

    Laura 

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited September 2011

    Laura,

    You have a great doctor who specializes in IBC.  You are in good care.  Being ER+, is a positive because there are many drugs to treat ER+ cancer.  If one fails to work after awhile; they have many to choose from.  I also have ibc in R breast as well as spinal bone metastastis upon diagnosis.  My pathology report from surgery came back with 4 nodes positive but of course I've already metastasized in the bone. I was able to do surgery because chemo kept me stable over a year.

    The only thing I can tell you to watch out for is lymphedema because you had a lot of nodes removed. 

    Good Luck with your treatment.

    Terri

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  • Claudia413
    Claudia413 Member Posts: 114
    edited September 2011

    You have (in my opinion) the best expert on IBC as your doctor. There are many of us IBCers out here enjoying life. I'm a 4-yr survivor and know one who just reached 20 years (what I'd like to do). If you would like a very active IBC support group, join us at www.ibcsupport.org. It's free to register and you post by sending an email to ibc@ibcsupport.org. You can get individual posts from them daily, a daily digest or you can go check it yourself daily. Many, many very smart and knowledgeable men and women on that site. It's always nice to know you're not alone in this. I'm a volunteer with one of the other IBC organizations and try to educate at least one person daily. You ought to hear me when a telemarketer calls...LOL.   Claudia

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