Pictures of progression?

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willowswhiten
willowswhiten Member Posts: 6
edited June 2014 in IBC (Inflammatory Breast Cancer)

Does anyone have pictures of how IBC progresses, starting from the beginning?  I would search the forum but I only have little 5 minute breaks throughout my days today and tomorrow so I don't have time to look myself.  Thank you so much if you can help me out!

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  • tlarnold
    tlarnold Member Posts: 24
    edited May 2011

    The IBC Project video has some really good visuals. You can view it via facebook and share with friends, https://www.facebook.com/?ref=home#!/event.php?eid=147402326727

    or watch it at http://www.cancerschmancer.org/articles/diagnosis-and-treatment/video-ibc-project-take-two

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  • TEK2009
    TEK2009 Member Posts: 62
    edited June 2011

    Terry

    It looks like you are doing ok now really hope thats the case, just wondered did your IBC start as a rash and go after treatment, also did you have an itchy rash and did you find anything that helped? Also is there hope my docs are rather neg about my prognosis, what treatment worked for you?

     Willows

    I cant show pics but I have watched my rash go from a few red lines under the breast over a period of weeks it spread across the breast to the upper side, initally a thin red rash then getting thicker, in few weeks have seen it go down onto skin below breast and under the arm. Not sure if that helps but mine is definitely moving it also moved to skin between the breasts but so far has stayed on one side.

    T

    Thanks T

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited June 2011

    My rash was around half my R breast.  My onc wanted to start chemo within 2 weeks due to how aggressive this is. After chemo, the redness was still there, but my breast was softer.  I got rid of the rash when I had the bi-lateral mastectomy a year later.

    Terri

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  • TEK2009
    TEK2009 Member Posts: 62
    edited June 2011

    Terri

    Did you already have bone mets when they gave you bi lateral MX? My onc told me there was no point in surgery as the cancer is in the lymphatics of hte skin, he said an mx would only lead it to grow faster at the edges where they cannot remove the skin, but I guess mine must have moved further already, its annoying really as I saw him in Feb and the rash was minor then, am concerned they did not say it was IBC in the first place as that might have made them more aggressive about a MX. But hearing you had one maybe I should ask again.

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  • nettie01
    nettie01 Member Posts: 1
    edited July 2011

    I would get a second opinion.  It seems as if your doctor is not aware of IBC and how to treat it appropriately.  Try to find a center in the UK that specializes in IBC or some place that you could go to for a 2nd opinion, but have the treatment closer to home.  It is your life-take it into your own hands!  I have IBC and my current plan of treatment is 20 weeks of chemo, then a single  mastectomy with no recontstruction, so I can immediately start radiation!  Good luck.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited July 2011

    TEK2009,

    I was fully diagnosed stage IV with bone mets.  I was also surprised about recommendation to do the mastectomy by my onc.  He kept me stable for 1 1/2 years before referring me for mastectomy.  Different doctors have different opinions on doing surgery at stage IV.  I personally feel better having had it done as my breast is not inflammed anymore (no redness or rash).  Maybe having ibc was the decision breaker to have the surgery for my onc.  My pathology report after mastectomy show microscopic cancer in the breast tissue that was taken off.  I feel better that it may prolong my life quite a bit even though I have bone mets.

    Terri

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    tlarnold,

    Is there a NON-FACEBOOK way to get to see this IBC Project? Thanks.

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited July 2011

    Lena, the video can also be seen here http://eraseibc.com/blog/2010/10/13/the-ibc-project-video/.

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