so confused

lstewart51
lstewart51 Member Posts: 43
edited June 2014 in IBC (Inflammatory Breast Cancer)


Had a great surgeon for mastectomy and original biopsies he has been adamant from the start it's ibc but oncologist says no it's IDC so after 8months of treatment I still have no diagnosis and oncologist says it doesn't matter. Going to teaching hospital Dartmouth so very good but so frustrated

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  • Kicks
    Kicks Member Posts: 4,131
    edited December 2013

    Based on what I've learned and what all my Drs have told me - it sounds strange they woild be that far apart on DX.  You've already had surgery?   There was no way that my surgeon would talk about surgery until after neoadjuvamt chemo,  SOP with IBC.    Read your path report and it will tell you.  There are huge differences between IDC (Invasive/Infiltrating Ductal Carcinoma) and IBC (Inflammatory Breast Cancer.  

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  • lstewart51
    lstewart51 Member Posts: 43
    edited December 2013


    pathology report doesn't give a diagnosis says it is in the skin and vascular lymphatic system surgeon was adamant right from the biopsy and oncologist says it doesn't matter what we call it treatment and prognosis is the same everytime I press him he says the same thing it's really confusing so 8 months later no diagnosis other than locally advanced breast cancer with 60 to65 percent chance of metastasis

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited December 2013


    Treatment can be very different. As kicks said, chemo, surgery, chemo radiation is the typical protocol. Very glad you are going to Dartmouth


    Keeps us posted


    Be well


    nel

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited December 2013


    I don't have IBC, but I do have a friend who does & the treatments are different. How did your initial diagnosis occur - were there any noticeable changes to your skin texture or color? I notice that you had neoadjuvant chemo - did you have the node removed prior to the chemo or after?


    I have to say that personally I would go see another oncologist for a second opinion, you will be dealing with him (or her) for a long time and it doesn't sound like you are getting the answers that you need.

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  • lstewart51
    lstewart51 Member Posts: 43
    edited December 2013


    I had an inverted nipple fullness and a puckering around the nipple had 7 biopsies that day along with a skin punch biopsy surgeon called the next day and said it was inflammatory. Then had 4 ac and4 taxol but it didn't even slow it it continued to grow had the whole breast by surgery. Oncologist said today he wouldn't change a thing treatment is the same for IDC or inflammatory I'm not getting a good feeling since they can't agree and they work at the same place

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  • mammalou
    mammalou Member Posts: 823
    edited December 2013


    I also had differing opinions due to cancer spread to the skin lymphatics. The reason is that the diagnosis of IBC is a clinical one based on symptoms. I had all symptoms except not a large enough area of my breast was red. This is not very comforting. My BS basically told me that maybe they caught the IBC early. I went on the John Hopkins ask the expert and she e mailed me and told me that in the skin lymphatics trumps symptoms and it is classified as IBC. My docs told me that they were treating me the same either way. The chemo you received is the IBC treatment with rads added on, so it is possible you are being treated for it.


    It is frustrating and scary to me. But, if you are receiving the treatment, it probably doesn't matter what it is called.

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  • lstewart51
    lstewart51 Member Posts: 43
    edited December 2013


    thank you I have been freaked out since appointment he made me feel hopeless

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  • mammalou
    mammalou Member Posts: 823
    edited December 2013


    are you having RADS next? I had RADS after mastectomy. I did confirm the treatment for IBC with the John Hopkins nurse,

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  • lstewart51
    lstewart51 Member Posts: 43
    edited December 2013


    yes meet with radiologist tomorrow

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  • lstewart51
    lstewart51 Member Posts: 43
    edited December 2013


    then hormones but he wants me to do low dose chemo st the same time and that I'm not sure abouy

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  • Kicks
    Kicks Member Posts: 4,131
    edited December 2013

    Bon - not all TX plans for IBC are chemo - surgery - Femara - then radiation.  Mine was chemo (4 DD A/C) - UMX - chemo (12 Taxol) - radiation and Femara started while doing rads.  There is no one 'set in stone' TX plan for ALL IBCers or with all Drs.  Neoadjuvant chemo (at least some) is pretty much the SOP but there  can be variations.

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