Confused about diagnosis

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the1truereblangel
the1truereblangel Member Posts: 15
edited June 2014 in IBC (Inflammatory Breast Cancer)

Had a core biopsy on October 19, 2010. Results received yesterday. Not IBC but inflammatory breast disease because of no HER-2 present? I KNOW there is something wrong with my right breast. I have been fighting this mass for 3 years now. Mammo's all come back suspicious, ultrasounds are all suspicious. Now, they are sending me to a surgeon tomorrow? Why? I am just so confused. I know this is IBC. I have every single symptom except the redness and orange peel come and go. I have had over 40 "in office procedures" in the past 3 years all involving cutting the breast open and packing it with packing having to be removed daily and repacked and whatever this is, just keeps returning. I am currently packed in my right breast and I can already feel the mass. soreness and heat. Sould I keep pushing these doctors for more IBC tests or should I just let it go and deal with whatever happens?

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  • momof2greatkids
    momof2greatkids Member Posts: 56
    edited October 2010

    Please post results of surgeon visit so I/others can give our input!

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  • LittleFlower
    LittleFlower Member Posts: 405
    edited October 2010

    Sorry to hear about all your troubles!  It's hard enough when something's wrong, nevermind not getting a straight answer on what it is!  My first thought is that you should try and get to a comprehensive cancer center if there is one reasonably close to you.  Since IBC can be hard to diagnose you want to see someone who sees alot of it!  DO NOT stop pushing.  You know your body best and if something's not right, keep pushing till you find the right person to help you.  You should look up Comprehensive Cancer Centers and find one close to you.

    Best wishes.... keep us posted.

    LittleFlower

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  • TammyLou
    TammyLou Member Posts: 740
    edited October 2010

    Yes.  I'm confused, too.

    My best understanding is that Inflammatory Breast Cancer is a subtype of Breast Cancer that is VERY OFTEN HER2+....but, not necessarily so.

    Have you been diagnosed with breast cancer, and this is a pathology question?  (Is it Invasive Ductal Carcinoma versus Inflammatory Breast Cancer?)

     Or is it that they don't think your breast symptoms are breast cancer?

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  • the1truereblangel
    the1truereblangel Member Posts: 15
    edited October 2010

    Was told it is acute, chronic mastitis. They won't do anything for me as my insurance will not cover mastectomies if not cancer. Thanks for all the helpful information on here. I will keep having my husband cut this breast open like we have been doing for 3 years now and pray it does not get any worse. Thanks to all of you and God Bless you all

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  • the1truereblangel
    the1truereblangel Member Posts: 15
    edited October 2010

    And today, now I have swelling on the left side of my neck. From right above the collar bone to the muscle that runs from top of shoulder to neck. Painful if pushed on and lots of little ridges under the swelling.

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  • the1truereblangel
    the1truereblangel Member Posts: 15
    edited November 2010

    Surgeon called today. I have an appointment tomorrow at 11:30am to discuss bilateral mastectomy. I have battled mastitis for over 3 years now, and they want to schedule to mastectomy for November 15th. I will be so glad to have this finished.

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  • TammyLou
    TammyLou Member Posts: 740
    edited November 2010

    Bless your heart, honey.  I hope that this brings you some relief.

    tl

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  • the1truereblangel
    the1truereblangel Member Posts: 15
    edited November 2010

    Thank you so much. I am absolutely terrified but so relieved. I am praying daily that this finally ends this frustration.

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