Is it IBC or Not? Help Very Worried

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Debbie225
Debbie225 Member Posts: 3
edited June 2014 in IBC (Inflammatory Breast Cancer)

OK so in January I was having some pain in left breast also started to notice my breast looking a little red on the skin above the top of areola also breast looked slightly bigger than right Had mamo, ultrasound all it showed was some cysts in the breast. I continued to have pain soreness in breast went to two breast drs both did not think it was IBC. The pain got a little better but slight redness stayed the same. It does get better if I lay down for a while or massage the breast the redness seems to go away. No itching warm, etc. I do have some burning but it mostly feels like the skin burning. Also breast seem to burn when they are cold. I finally had a skin punch biopsy. The dr did more to put my mind at ease. It came back negative. Also went to a dermotologist who also said it was not IBC. She says she had 3 people with IBC and even wrote a paper on it. After all I have read about IBC I am scared that it still could be IBC and they are just missing it. Any thoughts? Should I maybe insist on a different biopsy to be sure? I think the drs think that I am just overly concerned. Any help would be appreciated. I am driving myself nuts. I have lost 20lbs since this stared. I live in the NJ/NY area so if anyone knows of a good dr well versed in IBC that would help.

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  • KAud
    KAud Member Posts: 32
    edited April 2007
    I understand your worry but the skin punch biospy is "the" test for IBC. If it was negative, I would put those worries to rest BUT...you need to know what IS going on. It sounds like a possible infection. What did the demotologist say she thought it was??

    You were 100% correct to get the skin biopsy even after the mammo since IBC often does not show up on mammo or even ultrasound. IBC tends to not go away and come back so it really doesn't sound like what you have.

    I would push for them to tell you what exactly is going on but you should feel pretty confident that it is not IBC.

    Karen
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  • Debbie225
    Debbie225 Member Posts: 3
    edited April 2007

    They all seem to think that it is just how my breast is that is could just be the blood flow. I have heard that a punch skin biopsy can come back negative even though you have IBC. The breast dr said she went pretty deep. No one thought it was an infection as it was not hot or to them very swollen. Am I just being paranoid?

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  • KAud
    KAud Member Posts: 32
    edited April 2007
    Are you being paranoid?

    Probably...
    BUT..that can be a good thing. I think of you as just being an advocate for your own health.

    If this has been going on since January and your breast has been getting better (not worse) than that should also help ease your mind. IBC usually hits quickly and the breast swells an entire size (usually, not always), is warm, red, and has an "infected" look. Now, that is the textbook case and many woman with IBC do not present that way.

    However, it sounds like you are most worried about the redness which comes and goes. Like i said before, the redness would probably not come and go especially with massaging or lying down.

    The skin punch biopsy is testing whether there are cancer cells in the skin lymphatics of the breast. I am not sure I understand the "digging deep" comment but as long as they tested the skin area and it was negative...

    I wish I had magic words to ease your mind. All I can say is that from everything you have said it really doesn't sound like IBC.

    Sounds like you dodged a bullet to me

    Karen
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  • KAud
    KAud Member Posts: 32
    edited April 2007
    I just thought of this too...

    Often with IBC, no lump or mass is seen on mammo but many times microcalifications are seen. Or enlarged lymph nodes are seen on the ultrasound.

    Sounds like yours were all clear....more good news!

    Karen
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  • Debbie225
    Debbie225 Member Posts: 3
    edited April 2007

    By very deep I mean when I went to the dermatologist she looked at it and said that the dr did a deep biopsy. You are right I should be doing a dance. Thanks for the reassurance.

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  • lexi4
    lexi4 Member Posts: 1,074
    edited April 2007
    Debbie,

    I agree with KAren. It sounds like you are a-okay!

    Hugs,
    Lexi
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  • karenleah
    karenleah Member Posts: 1
    edited July 2007

    back on April 12,07 my mom Linda passed away after almost 2 years after diagnoses. This cancer is so aggressive and nasty. Never feel like you are being paranoid... Get the answers you need as quickly as possible,it may save your life

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  • Joanne46
    Joanne46 Member Posts: 8
    edited July 2007

    My left breast started out with having thickening around the nipple. I went in for a mamo in May, and the dr. never got the results, or lost them. It showed a thickening of the areola. Said to have a biopsy on the report!! I figured they would call me if there was a problem.... Now, I went back in two weeks ago because there are "pitted" or dimples on my left breast. It is very swollen, bigger than the right, and turning red splotches. However, it does not feel hot. I had a biopsy done last week, a punch biopsy, and the test came back negative, however, I am very worried still because no one seems to know what causes the redness, or swelling. I have pain under my left arm in the lymph nodes and around my breast bone between my chest and breast. He said it was "normal" to have swollen lymps after a biopsy???? The Surgical dr. just told me to come back in a month. My husband and I discussed the reaction of that dr., and we are asking for a second opinion or a second test. Do I have any concerns? Any advice?

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  • Joanne46
    Joanne46 Member Posts: 8
    edited August 2007

    Well, I am back with an update. I went to the Breast Cancer Center yesterday and the Dr. was very concerned. I told him that the surgical dr. told me to come back in a month. He said I did the right thing coming to him, and that he was very concerned about it being IBC. He took several core biopsies of the breast, and said he will know by Monday whether it is or not. I am so glad I did not wait like I was told to. Never accept one dr. opinion, always get a second or third if you need to. I am waiting now on the test results to tell me if I have IBC or not. Pray for me and my family!!! Thanks.

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