inflammatory IDC or is it IBC?

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dancingdiva
dancingdiva Member Posts: 475

I just received my path report following my BMX. I'm very confused. First line it says Inflammatory Carcinoma, yet afterwards it states residual IDC etc...Can it be IBC and IDC at the same time? I've already done chemo and up until now thought i had IDC. I won't be seeing MO till next week. It is in my skin lymphatic system but never presented itself as IBC Classic symptoms. Help..

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  • bride
    bride Member Posts: 382
    edited March 2015

    The radiologist who did my biospy DXed me with IBC. My path report said IDC. I sought treatment outside my tiny town and my cancer center reread the biospy slides and DXed me with IBC. Unfortunately, it is not possible to make a path report purely objective -- any two people can look at the same thing and see it differently. As always, Bon, our veritable fount of knowledge, is right in saying that when things aren't perfectly clear, you have to treat the more aggressive cancer. I am being treated under the IBC protocol.

    There is a theory that IBC is a subset of IDC. But it's only a theory. Having IBC is a hard journey but you can do it. This group is an amazing resource, please ask anything, rant, cry, laugh or whatever you need. I've found that my BCO sisters can help me through anything.

    Best wishes,

    bride

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2015

    Talk to you Dr(s)! ASAP and insist on answers now not later.

    It is quite possible to have more than 1 type at the same time.


  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2015

    Here's a document that describes recent revisions in the AJCC Staging System for Breast Cancer:

    http://labmed.ucsf.edu/uploads/210/101_new_ajcc_staging_of_breast_cancer_what_has_changed.pdf

    This document states that IBC is clinically diagnosed, not a pathology finding. (See p. 4, "Definition of Inflammatory Carcinoma and pT.") Unlike invasive ductal carcinoma or invasive lobular carcinoma, there is no specific cellular cancer type that can be identified under a microscope as inflammatory breast cancer. It's the behavior of the cancer that makes it IBC, and it's naughty stuff.

    The characteristics of IBC--warmth, redness and thickness of the skin of the breast--are a result of the skin's lymphatic channels being plugged with tumor emboli. Thus, when my small spot of IDC developed a small, red, peau d'orange "umbrella" of dermal lymphatic invasion, there was controversy between my MO, SO, and RO as to whether a diagnosis of IBC could be applied.

    It really didn't matter, though, as far as treatment went. As Bride says, they treated it as if it were IBC and threw the kitchen sink at it.

  • dancingdiva
    dancingdiva Member Posts: 475
    edited March 2015

    I am so confused after reading all these links. Is IBC only in the skin but underlying their is something else IDC,ILc, etc? That's what I'm understanding. Is this what happened to you ladies?

    What is the IBC protocol of treatment? most of u had ACT, some had others for HER+, I don't know what novelbbine orZeloda are. Are there others chemos specifically for IBC? I've already had ACT, BMX and now awaiting rads. What would it change for me?

    Any clarification would help in building up my knowledge.thanks.


  • Traveltext
    Traveltext Member Posts: 2,089
    edited March 2015

    I was diagnosed clinically with IBC after the FNA biopsy that determined IDC. The symptoms were classic as I have posted elsewhere on BCO. Because they started chemo urgently, there was no chance to do any skin tests, but by the second treatment the IBC was visibly reversed. By the sixth treatment the breast was normal and all that remained was the small IDC lump which was removed along with all the lymphs in the mastectomy. Radiation followed.

    The point to be made is that with attentive treatment you'll be on the road to recovery soon.

  • Noor46
    Noor46 Member Posts: 68
    edited March 2015

    Because my breast was a little swollen and very painfull, my docters thought it might be IBC, so I had biopsies of skin, lump and lymphnode. IDC was found in the lump and the lymphnode, but nothing in the skin.

    The MO I saw afterwards clinicaly diagnosed IBC, although she mentioned I had very few symptoms (no heat, no redness, only slightly peau d'orange)

    The bottomline is that it is important that it is treated as IBC even if there is a little chance it is not. Better be safe than sorry!

    You can do it!

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2015

    Dancingdiva, your first question--"Is IBC only in the skin but underlying their is something else IDC,ILc, etc?" is a good question! I'm not completely sure, but I think it can be either way. Sometimes there's a lump, with dermal lymphatic invasion that appears to be associated with the lump, and sometimes the cancer can only be found in the dermal lymphatics of the skin. And sometimes there's a lump that's diagnosed with a biopsy, with clear signs of IBC, and no skin biopsy comes up positive. In these cases, it's still treated as IBC.

    Navelbine and Xeloda are chemotherapy drugs. I had researched the latest studies and convinced my MO that since my MX pathology report stated there were tumor cells still present in the skin of the breast, we should go for more chemo. The TAC chemo I had received prior to my MX had not completely wiped out the cancer, which is not unusual with ER+. I wanted to be sure we attacked any cells that might be lurking around after my chemo. Navelbine and Xeloda aren't typically thought of as standard treatments.

    I don't believe there is a specific protocol for IBC--it's up to your MO--but whatever regimen they choose for IBC, it's the "big guns." And that's what your ACT was, a big gun.

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited March 2015

    My understanding of my IBC is that it is IDC with inflammatory features in the skin. In other words, under the microscope the cell structure is that of IDC. However, those cells were also present in the lymphatics of the overlying skin. I suppose that one could have lobular cancer that presents in the skin lymphatics, although I haven't heard anyone write that.

    I went on Taxol and Avastin immediately and even with just one infusion, you could see the cancer leaving the skin and the solid tumor (yes, I did have a lump) started breaking up like swiss cheese (I had ultrasounds every month so I know this was happening). By 3 cycles (a total of 9 infusions), just about everything was gone. I had to quit chemo then for other reasons.


  • Noor46
    Noor46 Member Posts: 68
    edited March 2015

    I get 4xFEC and 4xtaxotere. This is the standard treatment for IBC in France, if your not stage IV at diagnosis and like me ER+ and HER-.

    Noor

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2015

    My TX plan was different than most. To me, at the time and still today, it makes a lot of sense to me.

    I did 4 DD A/C to get it to form a 'lump with margins' so surgeon had a chance of getting it out as 'unit' which he was able to do. Then post UMX went back with 12 weekly Taxol to 'hit' any cell that might still be 'somewhere'. Then on to rads for a bit of backup.

    Worked for me - I'm 5 yrs NED.

  • ibcmets
    ibcmets Member Posts: 4,286
    edited March 2015

    Dancing Diva,

    I had both. I think the idc tumor made it easier to detect the problem since I actually had a tumor with inflammatory presentation.

    Terri

  • nugget47
    nugget47 Member Posts: 13
    edited March 2015

    My daughter had a similar dx to yours," winning so far ".  IDC, subtype IBC, TNBC, Stage IIIB, Grade 3, Tumor size 4.6 with finger like tumors of 1.5 & 1.1. One half of left breast was thickened, red, hot & orange peel appearance.  Received neoadjuvant therapy ACT, left breast mast, rads.  Currently receiving compassionate trial doses of Metformin and Omega3's from fam. dr.  Waiting for surg. date for removal of other breast as preventive from drs. at U-M.  So far, NED.  Keep on fighting!

  • bride
    bride Member Posts: 382
    edited May 2015

    My MO (my third one) explained to me that there are two archetypes of BC: that which is within the duct and that which has grown outside the duct. In that sense, IBC is a type of IDC. However, unlike IDC, IBC involves more skin tissue and is possibly triggered in a different way than IBC. She said that if you present with clinical indications of IBC, you have it even though the cellular structure doesn't differ from IDC to IBC.

    Sorry ths is incoherent. I'm freaking out because they found something on my spine. I'm waiting for a biospy. And feeling much, much, much more scared than I was when I was first DXed.

    bride

  • mammalou
    mammalou Member Posts: 823
    edited May 2015

    I had the same thing as you. 3.6 cm idc tumor, red breast, thickened skin, and then cancer in the dermal lymphatics was discovered. I still question what my actual diagnosis was. I was told that they didn't think enough of my breast was red to have the clinical diagnosis. That whole clinical diagnosis of ibc seems silly to me. Then I read in the BS report that it was probably an inflammatory cancer. They treated me as if it was ibc so that makes me feel a little better. I wish the whole thing could be more definitive because I still struggle with what it really was.

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