Any early symptoms in retrospect?

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AZ123
AZ123 Member Posts: 4

I have had itching in one spot of my right breast for probably a month (lotions were no help), then after a workout noticed the veins on my chest were standing out VERY dark on the right side--nothing on the left. Went to the Dr. who thought she possibly felt "something" in that area. Mammogram and ultrasound were negative. Dr. has ordered "dtectDx" blood test, which I gather is quite new--no results yet. Regular blood test came back with C-Reactive Protein (CRP) at over 10, which indicates an active infection or inflammatory process, but I have no other symptoms, no fever, no warmth on the breast. Dr. says it can't be IBC because "by definition" IBC can't be detected until stage III when it shows on the skin.

After I left, I started thinking, well, that has to be nonsense, because IBC has to start somewhere. There has to be a stage I, even if you don't call it IBC until it gets to stage III. So my question is, have any of you who have been diagnosed with IBC realized that there was some little nagging "something" that in retrospect you think was an early symptom--before the warmth or enlargement of the breast or skin changes?

I know you all have a lot to deal with and appreciate any time you can spare to think about this.

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    No - I never had any 'thing' I can look back at say "I thought 'something' might have been going on.".  I had a routine mammo in late June with no changes/nothing different.  Aug.1,  I found an enlarged (about the size of an almond) node under arm that definately had not been there the night before.  My PA was on vacation so it took me a week to see her.  The 'almond'  had become a 'lime' in that week.  The enlarged node was the first 'sign' - in the 18 days between DX and starting neoadjuvant chemo, I had developed enlargement in breast, peau d'orange and inverted nipple.  Aug 7 I saw my PA and had a new mammo and sono followed by biopsies.  The node was biopsied (and somewhere else in breast that Radiologist wanted to do) immediately.  Had path at 8 the next morning - with want was expected - IBC.

  • AZ123
    AZ123 Member Posts: 4
    edited January 2014

    Thanks, both of you!

  • amarantha
    amarantha Member Posts: 457
    edited February 2014

    Watch out for that "by definition" thing. IMHO there are too few of us, and still too little data for definitions to be so rigid. At first I was told, it's not IBC because the skin isn't red and "by definition if the skin isn't warm and red it's not ..." .... Later on, a more intelligent, or more up to date oncologist said, it's IBC, "but a different kind."  In any case, it is being treated as IBC.  

    My first signs were itching in the breast (I thought it was a reaction to a new bra) - then stinging and discomfort (thought it was a spider bite), then swelling (thought it was mastitis), then white build up behind the nipple. Still, I put off going for a mammo for a few months. Finally when I went, the technician could tell by looking at the breast and touching it that I was in trouble, and did biopsies right away, thank God, because the mammography showed nothing.  

  • AZ123
    AZ123 Member Posts: 4
    edited February 2014

    Amarantha, thank you so much for your reply. The blood test came back negative also, but I'm still worried because there seems to be some discoloration of the skin now in addition to the veins being darker on that side...still no redness or warmth, though. The itch comes and goes--or else I have just gotten used to it and only notice it from time to time. I insisted on a follow-up appointment next week.

  • AZ123
    AZ123 Member Posts: 4
    edited February 2014

    Oh, and also I have had sharp pains in the same area as the itch, but only rarely. Once it was enough to take my breath away--usually not so bad though. 

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