When can I stop worrying this is IBC?

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christirabbit
christirabbit Member Posts: 1
edited June 2014 in IBC (Inflammatory Breast Cancer)

My story started in the beginning of December when I noticed a large red area on my breast.  It has a very small vein sized thickening to it.  Im not sure if it is thickening or something else.  Its almost like a linear scar like area.  It is puffy but not really hard and can be felt just under the skin.  I first went to my primary doctor in January and he actually had experience with IBC because his nurse was diagnosed with it.  He told me that what I had was not IBC because I would have some type of swelling or skin thickening.  He did send me to get a mammogram and ultrasound of the breast whick came back normal.  I was still very worried and in Febuary went to another doctor and they again sent me to get a mammogram and ultrasound.  This time I was sent to a top of the line imaging center.  I had a full field digital mammogram and another ultrasound.  The radiologist actually came in and performed the ultrasound himself.  I told him that I was worried about IBC and he told me that my mammogram and ultrasound were normal and if it were IBC he would be able to see something.  He told me that it did not mean he would see a lump but I had no skin thickening on mammogram or ultrasound and he said that he was sure that is was a skin issue.  My mammogram report stated that my breast was a scattered fibroglandual density and my birad score was 1.  Im not sure that is important.  So, it has been about 7 1/2 months since I first noticed the redness and there has been no change to it really.  My redness does cover about 1/2 of the top part of my breast and you can see alot of red and purple veins underneath it.  Also the area of thickening or whatever that is, has not grown either.  My husband has since lost his job and we will not have insurance again for another 3 months.  Im kind of at a stand still and am not sure how I can proceed any further or if I should.  I have no swelling, no peau d'orange or any other symptoms of IBC.  Im not sure that my age matters either but I am 36. 

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Comments

  • leisaparis
    leisaparis Member Posts: 587
    edited July 2011

    I'm sorry you are having problems. However in my opinion I would have to say it IS NOT IBC. IBC is VERY aggressive and if it were IBC you would have had other symptoms in the last 7 1/2 months. Maybe it is dermatitis or some other kind of skin issue. Hope you can figure it out.

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011
    You can stop worrying that it's IBC when you GET A BIOPSY  and the BIOPSY REPORT tells you that it is NOT IBC.
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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited July 2011

    I would ask for an MRI.  There are women on here who had ILC that was diagnosed much later than it should have been because it did not show up on a mammogram or ultrasound. This is cancer in the lobules...I would be more worried about this than the IBC at this point.  I don't mean to scare you but its better to be safe than sorry.....I hope that it is nothing. But I can see that you are worried and I would highly, highly recommend asking for the MRI.  Good luck! 

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  • HerSister
    HerSister Member Posts: 51
    edited July 2011

    christirabbit - what about seeing if your state (or local gov't - depending on what country you reside in) has a program that will cover you while you are uninsured?  Probably better than waiting 3 months.  Also, since you've already been seen for this 'condition', whatever it is, that might come up as a pre-existing condition under your next insurance plan (even though nothing's been diagnosed yet).  Again, depending on where you reside, but this may be a huge obstacle in getting a diagnosis and treatment of whatever it turns out to be.  In my experience, pre-existing conditions require you to wait 6 months before the new insurance company will cover anything for that condition (if you received any kind of medical help for it prior to being covered by this new insurance company).

    Just my 2 cents.  Hope everything works out well for you, and quickly!

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