Worried and need info!

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Lea_Star
Lea_Star Member Posts: 2
edited June 2014 in IBC (Inflammatory Breast Cancer)
Worried and need info!
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  • Lea_Star
    Lea_Star Member Posts: 2
    edited July 2010

    Hi, have had a crappy week. Dr nitially said mastitis but called me the next day and asked me to come in. She spent an hour and a half telling me she thinks I have IBC. Have biopsy next day and ultrasound. Nothing on ultrasound. I'm on antibiotics as well. I'm just wondering if the antibiotics will have any effect if it is IBC. Still have redness and super large mass under my skin but do feel like the breast has slightly reduced in size. I did read on a site that the IBC can mimic mastitis by initially responding to antiobiotics but I can't find the site again. Anyway just wondering what your ladies opinions are?? Thanks so much.

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  • SeanE
    SeanE Member Posts: 107
    edited July 2010

    Lea,

    My wife is currently in treatment for IBC.  As to mastitis, it is usually the other way around - IBC appears to be mastitis.  If you don't respond to antibiotics, IBC should be considered as a diagnosis.

    IBC is generally diagnosed clinically - that is, based on symptoms, rather than specific cell characteristics.  The best way to find it is usually via a skin punch biopsy.  It also often manifests along with they other "types" of breast cancer (invasive ductal, lobular, or DCIS), although it can present by itself as well.

    It is important to understand that not every IBC case demonstrates all of these symptoms, but usually 2 or more are present:

    1.  Breast swollen, red, hot to the touch.

    2.  Breast has a mottled appearance, called "p'eau d'orange", that looks similar to the skin of an orange.

    3.  Skin of the breast thickens.

    4.  Nipple partially or totally inverts.

    Not sure where you are located, but a lot of doctors do not have much experience with IBC.  This is important because IBC should be treated differently than other types of breast cancer.  If you are in the Northeast, I HIGHLY recommend Fox Chase in Philadelphia.  This is where the world's foremost expert in IBC now resides - Dr. Massimo Cristofanelli.  If down south, MD Anderson would be great - it has its own clinic dedicated to IBC, and Dr. Cristofanelli actually just left MD Anderson to move to Fox Chase.

    Whatever you do, do not delay.  IBC is very aggressive, and treatment started sooner than later can make a big difference.

    A site that has been invaluable to me for IBC information is ibcsupport.org.  If you have any further questions, feel free to PM me, or contact the ladies at ibcsupport.

    Sincerely,

    Sean E.

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  • leisaparis
    leisaparis Member Posts: 587
    edited July 2010

    My IBC did respond to antibiotics in the first week, however it did not get rid of it. It only took away some of the heat, some of the reddness and my nipple did start to come back out. My dr. moved very quickly so by the second week I had a punch biopsy and a skin biopsy done. Which confirmed IBC. 

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