IDC to IBC, random thoughts

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lorieg
lorieg Member Posts: 802
edited June 2014 in IBC (Inflammatory Breast Cancer)

I was nursing my 6 month old and had a large firm area literally pop up overnight in my breast.  I know that there was nothing palpable one night and the next day I had a huge "mass" (later deemed inflammation).  Because I was nursing and pumping I was doing daily "self breast exams" to be sure I was empty, etc so this is how I am certain this thing came out of no where.  I had no nipple retraction/redness/orange peel texture at the time.  I thought I had a clogged duct so did the whole heat/massage thing and then when it did not resolve I scheduled an appointment to see my ob.  It was weeks before the more typical IBC signs appeared.  I think if I had had a biopsy earlier I would have been diagnosed with Stage III IDC, but not necessarily inflammatory.  Not sure if the IBC symptoms would have appeared during chemo or later on or in a recurrence. I keep reading all these stories of women who are diagnosed with IDC and much later present with symptoms of IBC.  I know the inflammatory changes are due to the lymphatic blockage, but is the prognosis of IBC stage IIIb really any different than that of IDC stage IIIb with similar hormone status?  We always read how aggressive and deadly IBC is but since it can ONLY be stage III or stage IV of course the stats are going to be awful.  What are the stats for all stage III and stage IV bc?  I suspect they are similar to the IBC stats.  I do believe I have read that more women with IBC are her2+ or triple negative, however.

Anyway, not that any of it matters really, and I am really not asking for prognostic statistics.  The only statistic that matters is your own, right?  Just curious if anyone has thought or insight into any of this stuff?  Am I the only one who wonders? 

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  • tigerkanga
    tigerkanga Member Posts: 6
    edited November 2009

    My original dx was IDC, this is why they rushed surgery, only to dx IBC from pathlogy report after mastectomy. They then told me I should have had Chemo first, well if I I'd know I would have agreed.

    My story is I went to GP after discovering nipple changes and thickening of skin in right breast early May 09, GP told me it was just my period. I told GP this was bull, as horomes would effect both breasts not just one. Got GP to refer me for Ultrasound. Ultrasound showed nothing but Tech agreed with me something was really wrong, so he wrote recommendation to GP I needed Mammogram. Went to GP to get referral, she told me I was over reacting, there was nothing wrong but got Mammo referral. Went to Mammo, then they did another Ultrasound, they told me on spot I had Cancer would need to see BS. Saw BS she didnt think it was as bad as Mammo people said in report. BS ordered biopsy, was booked into surgery the next week, Mastectomy and Node clearance done 15 June 09, major infection week later.

    Path report came back growth was 8cm x 9cm x 3cm, was Locally Advanced IBC, 5 of the 21 nodes taken affected.

    So after surgery I have had 4 EC chemos(three weekly), I have started 12 weekly Taxol chemos (4 done so far) and in the New Year will do 5-6 weeks radiation. I dont know if this is similar to your treatments in the US. I would be nice to know. 

    So I have been thinking about your question, and how much my misdiagnosis at the start has affected my treatment . I know from reading it hasn't improved my chances. In Australia there are no published, separate stats on IBC. So the only stats I can find are US or UK based. It is scary stuff. I wonder too you are not alone

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  • lorieg
    lorieg Member Posts: 802
    edited November 2009

    I am finishing up my chemo prior to hopefully having surgery.  I had 4 rounds of dose-dense AC and am completing 4 rounds of dose-dense Taxol with weekly Herceptin.  It sounds likewhat you are getting is pretty equivalent to everyone I have talked to in this process. 

    Were you diagnosed with IBC b/c of skin invasion on your biopsy?  My path report at diagnosis is IDC, but my clinical symptoms are obvious for IBC. 

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  • lorieg
    lorieg Member Posts: 802
    edited November 2009

    Thanks, Bonnie.  I read through your thread.  My breast MRI read inflammatory all over it, and my clinical symtoms are obviously IBC, but I never had a punch biopsy and have not had surgery yet.  My path report from my diagnosis says IDC.

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  • tigerkanga
    tigerkanga Member Posts: 6
    edited November 2009

    Hi Lori

    I don't think my doctors thought about IBC until path report done, after finding out I had IBC and knowing my clinical symptoms, its hard to work out why GP and surgeon didnt think IBC at the start, my Oncologist only one I've meet so far thats dealt with it.

    Take care

    Anne

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    I met with my ONC last week and asked him why some of my medical records called my cancer IDC and some called it IBC. 

    He said I have IDC with inflammatory breast cancer characteristics.  The IBC is how the cancer presents itself  and develops as an invasive ductal carcinoma....the presentation of the breast cancer is unique to how IBC presents itself.

    I asked him again... which I had! He said I have IBC that invaded my milk ducts and set my cancer off and running.  My cancer's characteristics are IBC invasive ductal carcinoma.

    Makes you wonder which comes first... the chicken or the egg...

    From what I gather... I have IBC... a breast cancer that doesn't present like traditional breast cancer with lumps and it is a rare cancer that presents itself as inflammatory in nature versus a hard lump... yet it is very aggressive and should be treated quickly once identified. 

    This IBC characteristic makes it a really dangerous breast cancer because it is hard to diagnose until it has reached stage 3 or 4.  Because most Docs don't see it often, they often misdiagnose it as mastitis or infected cysts which is also inflammatory in nature and this misdiagnosis limits early detection rates.

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