Diagnosis of ILC and IBC, can you have both?

anetnut
anetnut Member Posts: 49
edited June 2014 in IBC (Inflammatory Breast Cancer)

My biopsy showed invasive lobular carcinoma and yesterday when I went to the surgeon she said what I thought it had been all along, inflammatory breast cancer. She had the reports that said ILC, but just looking at me thought it was IBC. Can you have both kinds? 

While I was going to get back with the oncologist's office to make an appt. right after I had been to the surgeon, it was not too comforting to have the surgeon call the oncologist that I had chosen, but not even seen yet, and get me in for an appt. with her today, less than 24 hours later, with my MRI day after tomorrow also. So now instead of starting with surgery like I thought, looks like I'll start with chemo, then surgery, then rads. What can I expect at this visit today with the onco? Is it all talking and formulating a plan or do you think she may send me for more scans or even start chemo today? I just don't know what to expect. 

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  • SeanE
    SeanE Member Posts: 107
    edited June 2010

     IBC is generally treated with neoadjuvant (before surgery/radiation) chemo, followed by mastectomy, followed by radiation. 

    You can have both - my wife had IBC, IDC, and DCIS, all in the same breast.

    Your first appointment with your onc will probably mostly cover scans/test you will need, with a general overview of your treatment plan.  They won't know exactly what the best chemo to use for you is until the pathology comes back and all scans are complete.  FWIW, at MDA, they often use a taxane up front (Taxol or Taxotere), followed by standard FAC (Fluorouracil, Adriamycin, and Cytoxan).  If you are HER2Neu positive, your chemo is often TCH - Taxotere, Carboplatin, and Herceptin.  The Herceptin is specifically targeted for HER2Neu positive cancers.  You definitely want to know these three items: Estrogen sensitivity, Progesterone sensitivity, and HER2Neu status.

     You will probably receive a bone scan and PET scan, in addition to an MRI, and if doing certain types of chemo, they will want a MUGA - a heart function test - as some types of chemo can weaken the heart and they must be sure yours is up to snuff.

    Once the scans are done, they will want to start chemo ASAP, as IBC is generally aggressive and fast-growing.  My wife lucked out in that hers was one of the slowest-growing IBC's our onc had ever seen!

    Best of luck to you - hope all your scans come back good, and that your treatment is successful!

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  • lorieg
    lorieg Member Posts: 802
    edited June 2010

    IBC is a clinical diagnosis....my pathology reads IDC and DCIS, but clinically (appearance of the breast etc) I have IBC which is backed up by MRI.  I never had a skin biopsy or an actual pathology report that said IBC.  ILC +/or IDC is not mutually exclusive with IBC, if that , makes sense.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited June 2010

    I had a 3cm tumor with ibc and wouldn't you know spinal bone mets.  Due to the bone mets, I was already stage IV and did not have surgery or radiation, just chemo, zometa for the bones & femara after chemo due to being estrogen +.

    Terri

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  • MsSherryInFL
    MsSherryInFL Member Posts: 356
    edited June 2010

    I have a skin punch biopsy tomorrow.  I have had a rash for a few weeks (lacy) and it has gotten worse.  One part of it  is purplish and the skin has become thickened and rough. I was diagnosed with DCIS 2 years ago and had a BMX.  This rash appeared after reconstruction.  If anyone wants to see and offer opinion pm me.  A bit weirded out.  Felt like my BX days were over.

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  • Isla
    Isla Member Posts: 82
    edited June 2010

    You can indeed have mixed presentations.  I had a mastectomy for multi-focal ILC and the end histology revealed an additional IDC tumor and Pagets disease of the nipple.  

    The biggest problem I've found with having a mixed presentation is that all the statistics, re occurence rates, survival predictions and treatment plans are based on having just one tumor of one type.  To be honest I think the oncologists are floundering around a bit with me so giving me every treatment just to cover all bases! 

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