Got IBC Diagnosis Today-SURVIVAL RATE?

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ameron
ameron Member Posts: 98
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi All,

 Well Pet Scan results confirmed my Drs. suspicion that I have IBC.  I start Chemo tomorrow.  I'm reading alot of stuff on the internet about it.....and there is a lot of chat about it being "lethal"...very high rate of recurrence....so rare they don't have much info on it etc.....can anyone enlighten me?  I realize that part of the reason it has a lower survival rate is because it is usually not caught until it has already advance/spread to other organs...mine has apparently not spread......does this mean my survival rate is just as good as any other bc? Or is this type harder to treat?  Etc?? My dr. is not answering these questions....I know he just wants to get me in chemo and see how tumor responds....any advice is appreciated.....

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited May 2009

    Ameron,

    There are statistics all over the place and they are improving.  There is quite a bit of info and research on IBC.  They had the first International Conference on Inflammatory Breast
    Cancer last Dec, with Drs and Scientist from all over the world.  Join the Ibcsupport.org site, and talk to many of the long term members, and let them tell you of their 19 year non recurrance story.  IBC is aggressive, but the rates are improving. 

    We wish and pray for your good response. and will help with any questions.   

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited May 2009

    Like any disease the early find is everything...also is your receptor.  The more known drugs to work with your receptor the better off you are.  Do you know your receptor and stage yet? 

    Sorry you had to join this small club.  I hope you will find treatment gentle and very effective.

    Flalady

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  • DianeE
    DianeE Member Posts: 176
    edited May 2009

    Ameron,

    Sorry you had to join us in the IBC group but please know that there is a lot  support as you start this jouney.  I would read daily, not really post, and found the people hear to be an inspirtaion and a great comfort, even at 2am.  I am nearly at 2 years post dx and doing well.  A few bumps in the road, but nothing that was ca. 

    Medicine is at an amazing place with new molecular testing being developed that will target our specific diseases and their corresponding genetic make-ups.  I find great hope in that drugs that were not available 6 years ago are now a standard of care and six years from now, there could be new drugs that are not available now. 

    Let us know how you are doing and feel free to ask anything.  Be careful of the online stats as they can be scary.  You are not a statistic.

    Diane

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  • Leslie304
    Leslie304 Member Posts: 4
    edited June 2009

    Hi, I'm worried ...my tumor is not responding so far.  Does anyone have experience with a tumor that was slow to respond but eventually did respond?  Right now I'm "Inoperable."  I don't know the cm of my tumor but it pretty much encompasses my entire right breast. (BIG!)  I'm Est neg and HER2+.   I've had three rounds of A/C (over six weeks) and now have been switched to Taxol/Herceptin. I had one "full" treatment of Taxol/Herceptin, then a week later one treatment with just Herceptin, due to go back next week for antoher Taxol/Herceptin.  I'm so worried about no response to treatment so far?  I'm confused about protocols too.  They don't seem to be standard among hospitals but I am keeping faith in my doctor.  Any encouraging words out there about slow responding tumors?  It is so hard not to live and breathe this every minute.

    Leslie

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    Gg08 prayers that you have wonderful scan next week!

    Lesile,

    I've done ten different chemo's in almost four years.  Some kicked butt some didn't.  My 2nd chemo set Gemzar, Carbo & Avastin kept my ibc away for two whole years!!!  (I have TN so my disease is really hard to treat/also a basal tumor) So you can't go by my history. 

    My tumor's usually took two months to show response but evey one is different.  Remember that there are many chemo they can use.  Usually they do treat ibc just like IDC.  You may want to see what other Her2 ladies are using for their early treatment options.  BC does have standard protocols we all have too go through and than they get more creative.

    Flalady

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