I'm back and worried

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Bobbie37
Bobbie37 Member Posts: 23

Hello,

You were all so good to me when I posted here.  So I had went to the breast sx and my biopsy's came back negative (skin punch).  But still with red rash both breast's, red, hot and itchy.  It does appear now that the left breast is a bit larger then the right.  I guess I am worried about a false negative?  My primary care doctor put me on another cream this one a little stronger.  She does not seem to be worried????  I am.  This has been going on since end of April with no diagnosis or solution.  Every cream, antibiotic has not worked.  Should I be worried?  Has anyone ever heard of IBC in both breast's? Should I go back to the breast sx?  Is there any other test to do that can for sure r/o IBC?

Thanks all of you!

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited June 2009

    Bobbie:

    Some times the biopsy can come back false negative.  I would go  back to the breast surgeon and have him/her do another biopsy if they will not do another biopsy get another opinion for a surgeon who has heard of IBC.

    I believe the IBC can be in both breasts.  I do not know where you live but you may want to check out MD Anderson in TX or UofM in michigan they are both doing research in IBC.

    Hugs

    Laura

  • Bobbie37
    Bobbie37 Member Posts: 23
    edited June 2009

    Great thanks for the feed back...  I live in Arizona

  • idaho
    idaho Member Posts: 1,187
    edited June 2009

    Get a second opinion....maybe see a dermatoligist?  Tami

  • Bobbie37
    Bobbie37 Member Posts: 23
    edited June 2009

    Yes, I am in Glendale AZ so about 45 minutes drive to Scottsdale.  Not sure if she was a oncologist or not.  But she seemed pretty sure it was not IBC.  She said very rare to have in both breast and I would be a "text book case" if IBC in both breast's.  She also said she had seen IBC and you know it when you see it, mine did not appear to look like it.....  When the puch biopsies came back she said the report said no IBC, no Padgets disease, just "chronic inflammation".  Is that not what IBC is?  Inflmmation of the breast tissue????

    Maybe I should try to find a Oncologist breast doctor?  Any of you ladies out there who can guide me to Arizona doc's?  Is the Mayo clinic the best place?

    I'm pretty scared at this point and it's been going on for way to long with no diagnosis.  I did have food allergy testing yesterday so waiting for that to come back.  I have a lot of stomach symptoms with this as well.  Can't eat much, Nausous a lot, bloating etc so not sure if this is all tied together????

    Thanks again... All of your feed back and suggestions mean a lot to me!

  • Caseysmom
    Caseysmom Member Posts: 507
    edited June 2009

    Bobbie:

    I would go  to the Mayo Clinic and get a second opinion.  There is not a lot published about IBC so you never know you could get it in both breast.  I would not stop until you get an answer you are satisfied with.

    Hugs

    Laura

  • Bobbie37
    Bobbie37 Member Posts: 23
    edited June 2009

    I have a call into the breast sx I saw to ask about false negative etc.  All my bllod work came back normal.  No allergies to foods etc.  I will keep you posted.

  • cheers247
    cheers247 Member Posts: 270
    edited June 2009

    Gg08 & others, my tumor marker labs were all NORMAL too, CA27.29 & CEA, all NORMAL.  Reassuring, but I still have stage IIIb IBC.

  • Bobbie37
    Bobbie37 Member Posts: 23
    edited June 2009

    Thanks ladies,

    I talked to the doctor who I saw a few weeks ago, the breast sx today over the phone.  She is so nice.   She said she did some research and the chance for a false negative bio is like less then 12%.  She also said that IBC is more of a clinical diagnosis and you know it when you see (she said I did not have all the classic sx) and in both breast is almost never heard of.  She feels stongly my rash is not IBC but did ask me to come back in and see her next week.  She said we could talk about it some more and she would be willing to do repeat bio's if it would make me feel better.  So I don't know I see all the posts where you were undiagnosed for so long and blood test were normal etc and just feel so scared to continue to ignore this rash... Also nervous about the mammo that said prob a lymph node not a lump on my right breast.  Should I ask her to bio that too?  My G-ma died in her 40's of breast cx.  I am just so worried....

  • Jadai
    Jadai Member Posts: 182
    edited June 2009

    At least you have someone taking you SERIOUSLY!  I have read too many times about women who wanted more testing and were ignored only to find out they were misdiagnosed.  Good for you and your doc!

  • ameron
    ameron Member Posts: 98
    edited January 2010

    Hi....definitely keep having it checked....there are posts here by IBCSPOUSE in which he gives a very interesting story of his wife who has inflammatory in both breasts.  When I find the post I will link it here!!!

  • Bobbie37
    Bobbie37 Member Posts: 23
    edited June 2009

    Thanks everyone for your support!  We will see what the doc says on Wed.  I also think that the left breast looks bigger then the right.  But who knows anymore beginning to think this is all in my head all though in my heart and gut really feel something is wrong.  Yes, please send any stories of anyone like me and had in both breast's etc.  I will keep pushing till I get an answer!

  • Bobbie37
    Bobbie37 Member Posts: 23
    edited June 2009

    Hello all,

    So I have another appointment with the breast sx on Wed am.  My rash is actually looking a bit better now.  I did receive my bio report in the mail.  I thought someone said for it to be accurate it has to include breast tissue???  On each breast that was bio it says no breast tissue for evaluation.  What is that suppose to mean?

    So I am just wondering how accurate this bio really is? 

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