Its me again still w/o answers

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bellesmom
bellesmom Member Posts: 24
edited June 2014 in IBC (Inflammatory Breast Cancer)
Its me again still w/o answers
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  • bellesmom
    bellesmom Member Posts: 24
    edited June 2010

    Hi everyone,

    I'm back again and more frustrated than ever.  I have been on this journey to nowhere it seems but if you could all could help me I would be most appreciative.  I cannot locate my previous entries but I'll keep it short.  I have been itching on/off for at least 18 months to 2 years with a pink spot at about the 9 o'clock position on my right breast.  I have pain that radiates to my back and a swollen lymph node as well.  When I had my mammo/us back in August/Sept I was told my right breast appeared thicker and the lymph node showed up on the u/s but the radiologist said no bells went off that made her believe she needed to bx it.  

    Fast forward to today and I am off to see yet a 3rd breast surgeon on Wed who I will have to retell this story to yet again.  To say I am frustrated is an understatement and I am beginning to think I am making a mountain out of a mole hill.  

    I am wondering how you all got the surgeon to finally take you seriously?  What questions should I ask in the hopes of getting that bx?  I would appreciate any help insight you can give to me.  I expect that once I leave the office I will still be in this same perdicament.  Sorry to sound so pessimistic but as I said frustration has set in.

    Thanks for listening,

    Rebecca 

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited June 2010

    Rebecca,

    If you have classic symptoms of ibc, they should do a biopsy.  Mine was detected on mammo & ultrasound because I also had a 3cm tumor along with thickening and inflammed skin.  I also had itching and warmer skin than the opposite breast.  I hope they check this out for your piece of mind.

    Terri

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited June 2010

    I don't have IBC, but what I have learned through my BC journey you need to push, push, for that answer, wheter its good or bad!!!!

    I wish you luck and let us know if its good or bad!!!!!

    Hugs too you!!!

    Bridget

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  • hopeful34
    hopeful34 Member Posts: 1,569
    edited June 2010

    I don't have IBC, but I do have IDC and they did mammos on me and of course nothing showed up because of dense breast tissue.  I don't know your age, but I know the younger you are the less likely a mammo will show anything.  If they won't bx you, then see if they will at least do a breast mri.  I know alot of times they can't biopsy unless they have a definitive spot to do it on.  The MRI will show more (or at least in my case it showed 3 more spots than the mammo and u/s did.) Maybe, try calling American Cancer Society and see if they have any suggestions of what you can do.  Good luck and keep us updated.  Take Care!  Allison

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  • bellesmom
    bellesmom Member Posts: 24
    edited June 2010

    Thank you everyone for getting back to me I really do appreciate it. 

    Terri, the only symptoms of IBC that I have are the pinkness, constant itching and aching on my right breast.  I believe because its not the orange peel looking or flaming red they are not concerned by it at all.  

    Bridget, I to am learning that I need to be more demanding and speak up as it relates to my health care needs.  For me the hard comes in doing just that but as I get older I realize that if I don't do it who will.  

    Allison, I am 41 so perhaps my breast tissue is to dense to show anything.  You would think though that with an u/s showing a swollen lymph node that a breast MRI would be automatic but not so. 

    Thank you again ladies, and I'll be sure to keep you all posted about everything.

    Rebecca

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  • Faith316
    Faith316 Member Posts: 2,431
    edited June 2010

    A dermatologist can do a punch biopsy.  Maybe that is another option for you.

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  • SeanE
    SeanE Member Posts: 107
    edited June 2010

    The skin thickening IS a classical symptom of IBC.  At MD Anderson, they sometimes just make the diagnosis clinically, w/o any pathology.

    The test most effective for detecting it is a skin punch biopsy, and even that is not 100%, so it may need to be done more than once if symptoms continue.

    Hope this helps,

    Sean E.

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  • peacelovedogs
    peacelovedogs Member Posts: 57
    edited June 2010

    Mayo doesn't require a positive skin punch either for IBC.  They look at the symptoms combined and if a punch comes back negative but all other looks positive - they treat it as IBC.  At least that is how it was with me.  I was positive for IDC and they said they were doing a punch just for my record but they were treating me as IBC regardless.  Mine did come back positive.

     PUSH for what your gut is telling you.

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