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GRVT2013
GRVT2013 Member Posts: 5
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello. I am 43 years old and I was diagnosed with invasive ductal carcinoma about a year ago. It was ER/PR +, HER2 +, nuclear grade 3. It was in the lymph nodes but further tests showed it didn't go any further than that. I had 2 surgeries - lumpectomy and wider margins/left side reduction, 5 months of chemo, 2 months of radiation, I have to continue with the herceptin until 8/2013, and I am on 5 years of tamoxifen.

Over the past few days I have started to get symptoms that seem to be very consistent with IBC. The breast (BC side) has become hot and inflamed, it is swollen and reddened. It is also hard and sore. It has what looks like pitting or orange-peel effect. I can't feel any lumpy axillary nodes; however that whole chest/arm/neck/shoulder  area on that side feels so sore. 

Are these consistent with IBC? COuld it be possible for me to get IBC while still in the midst of treatment of my IDC? I have a meeting with my doctor tomorrow - regular appointment - so I am relieved that I won't have to wait long to be seen. I am scared to death. Here I was thinking I was getting to be in the clear and now this.

Would love to hear everyones thoughts/experiences.

Thank you!

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited February 2013

    I'm glad you're getting it checked out.  The symptoms sound very familiar to ibc.  I had ibc & idc at same time.  I think the idc tumor I had made it easier to at least get thorough testing where ibc was confirmed.

    Terri

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  • GRVT2013
    GRVT2013 Member Posts: 5
    edited February 2013

    Thank you for your response Terri! My appointment went okay today. They are thinking it is an infection and really dismissed the idea that this could be IBC. I am on antibiotics and they said if it doesn't get better by Monday I need to go back. They said that 'there is no way' this could be IBC because I just went through all the treatments for the IDC. Had you gone through any treatments for your IDC when your IBC was diagnosed?

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited February 2013

    I was diagnosed for both at same time ;with ibc chemo is always first.  Within 2 weeks of diagnosis I started TAC chemo (taxotere, cytoxin & adriamyacin).  I had bi-lateral mastectomy a year later because the chemo did not get rid of the inflammatory bc completely.

    I hope yours is only an infection that can be resolved easily.

    Terri

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  • weety
    weety Member Posts: 1,163
    edited February 2013

    It is probably unlikely that an IBC tumor wouldn't respond to your IDC treatment, but anything is possible with cancer. Don't forget, there are some cancers that don't respond to particular chemos.  I would keep on top of it (like you are!)  I'm glad that they will check you out again on Monday if it doesn't improve.  Keep us posted. 

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  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2013

    I don't want to alarm you but their statement that there is no way it could be IBC because you just went through all the treatments for IDC is just totally false.  I was diagnosed with IBC while I was still going through treatment for IDC and DCIS.  They told me the very same thing.  There is no way.  Well, I insisted on having it biopsied (punch biopsy and surgical excisional biopsy) and guess what.  I was right.  It was IBC.

    I don't say this to scare you and I hope they are right and it is just an infection but don't let them tell you "no way."  You can tell them you have first hand knowledge from at least one person that it did happen to. 

    Keep us posted.

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  • GRVT2013
    GRVT2013 Member Posts: 5
    edited February 2013

    Thank you all for the responses. I have been on antibiotics since Thursday morning (they gave me IV antibiotics before I got my herceptin treatment - and I have been taking oral antibiotics since then), no change yet. Not worse, not better. It probably takes a little longer than this for them to kick in - but that isn't helping my psyche!

    Thank you again. I will keep you all posted.

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  • GRVT2013
    GRVT2013 Member Posts: 5
    edited February 2013

    PS - I have a regularly scheduled mammo for this coming week, is IBC detectable through mammo?

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  • weety
    weety Member Posts: 1,163
    edited February 2013

    I think you need a punch biopsy.  I don't think mammo will see it.

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  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2013

    Mammo won't see it.  My IBC started in January but wasn't diagnosed until June but in April I had a mammogram that came back perfectly normal.  I had a punch biopsy and also an excisional biopsy when my IBC was diagnosed.

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  • GRVT2013
    GRVT2013 Member Posts: 5
    edited February 2013

    Hi - thank you so much for all the good information. I met with a surgeon yesterday, had an ultrasound, and had a mammogram. They have convinced me that this is just lymphedema. They will be referring me to someone for LE massage and exercise and will see me back in a month. They didn't 'dismiss' IBC, which was what I was afraid they would do. Instead, my surgeon who is a BC survivor said that she gets LE and said this is exactly what hers looks like. I left there definitely feeling more at ease.

    I definitely appreciate being able to come here for support, information, and just to vent my fears. Thank you!!

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  • weety
    weety Member Posts: 1,163
    edited February 2013

    You could always demand a punch biopsy, just to be on the safe side.

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