IBC......clinical diagnosis only :/

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Gymgirl2679
Gymgirl2679 Member Posts: 27
edited June 2014 in IBC (Inflammatory Breast Cancer)

I am calling on you ladies once again!

I have a positive "CLINICAL" diagnosis for IBC...my first punch biopsy was negative, going back to  Fox Chase for repeat biopsy, several punches this time, my question is........HAS ANYONE BEEN DIAGNOSED AND TREATED STRICTLY FROM A CLINICAL DIAGNOSIS???  I have been told that IBC can be diagnosed without a positive biopsy but can it be treated without a positive biopsy??

My story is unique, as I was undergoing treatment for IDC and DCIS when i developed the "rash"  as well as other symptoms including the "orange peel" between my A/C chemo drugs and the Abraxane weekly drug, went to all my docs who dismissed it as this and that but never would biopsy, gave antibiotics 2x with no change, ultimately finished my 6 months of chemo and 6 weeks of daily radiation,  we (not my original team) are now trying to put the puzzle together and have all the pieces but one and that is the pathology. 

Your input, and stories are much needed and greatly appreciated!

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  • Letlet
    Letlet Member Posts: 1,053
    edited March 2011

    Hello gymgirl, I believe IBC is the clinical diagnosis and the path results usually show invasive cancer. The path report won't come back saying "IBC", it WOU:D show the malignancy and that there was skin involvement. Chemo is usually done so perhaps that is why they did not biopsy you in the middle of treatment because you were getting chemo already anyway. After the chemo, did the rash and orange peel resolve?

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  • SeanE
    SeanE Member Posts: 107
    edited March 2011

    Folks at MD Anderson, who got their training from Dr. Christofanelli who is now at Fox Chase, say IBC is a clinical diagnosis.  You are in good hands there - Dr. Christofanelli is the world's expert.

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  • Faith316
    Faith316 Member Posts: 2,431
    edited March 2011

    Your story is not totally unique.  I was also in the midst of active treatment for IDC and DCIS when I had symptoms of IBC that were initially dismissed as "couldn't be IBC after all the chemo and radiation and while you are still in active treatment."  But, it was IBC.  After a change of chemo, I have now been NED for over a year and a half.  (BTW -- I did have positive pathological reports for IBC -- both my punch biopsy and my excisional biopsy and not just a clinical diagnosis.)  Good luck to you.

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  • Letlet
    Letlet Member Posts: 1,053
    edited March 2011

    Hi faith, did your path report state that the tissue was IBC ? I have been told of the above post by yhenurses at my cancer center. I usually dont post if i'm not comfortable w my answer and i feel awful now.

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  • Gymgirl2679
    Gymgirl2679 Member Posts: 27
    edited March 2011

    Faith

    I developed my symptoms between the A/C and the Abraxane chemo treatments, went to my team and was dismissed for the same reason you stated "IT CANT BE, YOUR ON ACTIVE TREATMENT" I kept going back to them as the rash seemed to get larger and then the pits, which i now know as the "orange peel" again dismissed, requested a biopsy then and they said no because by now I was in radiation and they wouldn't stop radiation for a biopsy.  I finished and did go to Fox Chase 2 weeks post radiation and had a punch biopsy, results didn't show cells, however i do continue to present "clinically" positive.  I will return to Fox Chase for repeat biopsy, excision I believe this time. 

    What if i don't get the results but continue to present clinically positive? That is what I am concerned about, what then? Beyond frustrating.  We  have all the pieces of the puzzle but one, the pathology, have the symptoms, the thickening, visible on ct scan, mri, ultrasound, mamm, orange peel texture, burning sensation, red, heavy, and now what looks like a bruise!

    Hope  your doing well and thanks for posting! Take care.

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  • Tundra
    Tundra Member Posts: 136
    edited March 2011

    Hi there,

    Yes, I have a clinical-diagnosis only as well. I had a lump, which came back positive in my biopsy, but because I had a pre-existing benign lump I had not noticed it. So it was the redness and swelling that led me to getting it checked out.

    Apparently my surgeon and medical oncologist didn't agree 100% at first about the IBC diagnosis, because I didn't have some of the more dramatic symptoms, but yes, apparently that is how it's diagnosed these days: clinically. They avoid doing anything invasive like a skin-punch test because you have to watch it with invasive stuff and IBC. Just the same as how you need your neo-adjuvant chemo prior to surgery.

    For awhile, one of my family members was really harping on "Is it really IBC or not?", but it doesn't change much really. I'd still have the same treatment. And I figure it's better that they over-estimate what it is, than under-estimate and not treat it as it needs to be treated.

     Best of luck with everything.

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