IBC?

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Shachar
Shachar Member Posts: 229
edited June 2014 in IBC (Inflammatory Breast Cancer)

I posted on the just diagnosed area, but thought you ladies may be able to help more.  I went to see a breast surgeon for reconstruction options after an upcoming double mastectomy for a large tumor (approx 3-5 cm per the oncologist, radiology report says 2.5).   My biopsy was as below, ER+, PG+, HER-, grade 2.  I was hoping to be a candidate for NSM versus just SSM.

The doctor looked at my records and then did an exam before saying she felt I had Inflammatory Breast Cancer!  Note that my oncologist did not see this, the general surgeon did not see this, and a previous plastic surgeon consult did not see this.  I have a history of one day (maybe two?) that my breast turned red and was warm to the touch.  But also during this time I was using a heating pad daily for the breast pain.  No doctor ever saw this, it is from my own report.  My nipple is not inverted, although it does "pull" to the left in the direction of the lump.  The redness never came back and it's been about 2 months since it came.  No orange peel, no redness,  nothing there. All day now I have been obsessing, trying to push the skin up to see if it gets any of those dimples in it.  She also said the skin looked "shinier" to her.  I put olive oil on that breast each night to massage it.  Maybe that accounts for the shine?  It doesn't shine when I have taken a bath and washed the oil off.  I don't see a shine.

I don't know enough about it, but it terrified me.  I called the my oncologists office this morning and spoke to her nurse, who said there is nothing in my charts to indicate IBC.  What am I missing here?   I'm scared enough with a recent BC diagnosis and now have been told that this breast surgeon feels I am at a stage 3C with IBC.  I have had no other staging done yet to determine node involvement, no PET done yet...all upcoming.  She did do a needle aspiration of an enlarged lymph node, saying it was soft and held clear fluid to be sent off to pathology.   Results Monday.

Please tell me what I am missing?  Could three other specialists miss it?  Thank you all in advance.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited May 2012

    Protocal for ibc is chemo first.  I had obvious ibc along with a 3.5 cm idc tumor.  Are you sure the redness & warmth did not come from the heating source you used?

    Ibc is like a nest or web of cancer that may harden your breast like a band across your breast.  I had all symptoms; larger red & warm breast that had what looked like a  bug bite.  It was also itchy.  I did not have any pain or fatigue b/4 treatment.

    I had mammo, ultrasound & guided biopsy a week later that confirmed ibc as well as idc.

    They will want to get you in treatment asap if you have ibc.  If you could get a quick 2nd opinion; that would be good.

    Best wishes on your treatment.

    Terri

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  • Shachar
    Shachar Member Posts: 229
    edited May 2012

    Thank you, Terri.  I'm not so sure that the redness didn't come from the heating source and I told them that as well.  My breast was hard feeling, heavy, and bigger than the other but it also has a big lump in in, lol.  It has softened up, though, probably due to the hormone fluctuations throughout my cycle, and the breast has actually shrunk in size.

    The onc didn't mention starting chemo until after surgery.  I am going to a second PS consult today, so I will see if they see any evidence of IBC and I have a call in to the onc to see if I need to come back in before surgery (she hasn't scheduled me to come back for 6 more weeks). So IBC would have shown up in a biopsy?   They took four pretty good pieces out, each about an inch long.  Thank you for responding!!!

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  • Shachar
    Shachar Member Posts: 229
    edited May 2012
    Updated to say the PS today saw no evidence of IBC, and I also called the oncologist.  They do not need me in until about 5 weeks after surgery and they said they also saw nothing that would indicate IBC.  They sounded a bit confused as to why someone would have thought that.  I've still been staring at my breast all day, looking for any hint of things I have seen in pictures but I don't see it.  Why do doctors do things like that? Surgery soon, can't wait to get this out.  Smile
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  • Claudia413
    Claudia413 Member Posts: 114
    edited May 2012

    My two cents worth: I'm a 4-yr survivor of IBC. I only had ONE symptom; a slight reddish rash or blotchiness on one breast. Some of the women in my online support group had ALL the signs and symptoms of IBC. IBC presents differently in everyone. One of my IBC sisters was misdiagnosed by 4 different doctors before she got her correct IBC diagnosis. I would ask the one doctor who said she thought you had IBC why she thought that, when no one else had mentioned it.  Since most doctors never see a case of IBC, I would want to know what her experience has been with IBC. Maybe she's one of the doctors who has actually seen it or had to deal with it before. 

    With IBC you have chemo first, not surgery...so I would want to know for sure exactly what I had before I started any treatment.  Just sayin'... 

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