Inflamatory breast cancer

lileva
lileva Member Posts: 9
edited March 2014 in Breast Cancer #1
I have been diagnosed with inflamatory breast cancer three months ago and would like to talk with survivors.

Comments

  • tlmac
    tlmac Member Posts: 272 Member
    #2
    Your cancer is pretty rare. You might scroll to the bottom of this page and do a search of this forum for IBC. There's also a website specifically for IBC where you'll find survivor stories. Promising research is currently going on for IBC. Much of what you'll be going through we've all experienced so don't hesitate to post if we can be of help. I do understand your desire to connect with women who share your diagnosis so here's the website I mentioned:
    http://www.ibcsupport.org/
    Will keep you in my prayers.
    terri
  • Denii
    Denii Member Posts: 1
    #3
    Survivor

    Hello Lileva,

    Im sorry you get to join our group of survivors...

    but Im here if you would like to talk. Im a 10 year survivor from treatment.

    I know it is said your a survivor from diagnosis but for me...its from last 

    day of treatment.  Cool

    Denii

  • Rague
    Rague Member Posts: 3,653 Member
    #4
    Denii said:

    Survivor

    Hello Lileva,

    Im sorry you get to join our group of survivors...

    but Im here if you would like to talk. Im a 10 year survivor from treatment.

    I know it is said your a survivor from diagnosis but for me...its from last 

    day of treatment.  Cool

    Denii

    This is a 10 plus year old

    This is a 10 plus year old thread with no posts during that time.

    Winyan - The Power Within

    Susan

    (I'm a 5 1/2 yr IBC Survivor and still NED.)

  • GlowMore
    GlowMore Member Posts: 789 Member
    #5
    Rague said:

    This is a 10 plus year old

    This is a 10 plus year old thread with no posts during that time.

    Winyan - The Power Within

    Susan

    (I'm a 5 1/2 yr IBC Survivor and still NED.)

    ??

    Susan....I have noticed that my left breast (the one they did the Lumpectomy on) has been very shiny and very red lately.....   what were your symptoms ?  I first looked at your Home Page but you don't have it described there.    Just hearing the words "Inflamatory" makes me wonder about the very Red Areas.

    thanks,  Glo

  • Rague
    Rague Member Posts: 3,653 Member
    #6
    GlowMore said:

    ??

    Susan....I have noticed that my left breast (the one they did the Lumpectomy on) has been very shiny and very red lately.....   what were your symptoms ?  I first looked at your Home Page but you don't have it described there.    Just hearing the words "Inflamatory" makes me wonder about the very Red Areas.

    thanks,  Glo

    Call your Dr and talk to

    Call your Dr and talk to her/him about the changes.

    In my case, the first 'sign' was a lymph node that enlarged to the size of an almond literally overnight - not there one night but there the next.  My PA was on vacation so it took me. A week to see her (I didn't want to see anyone else).  In that week, it did enlarge and she sent me for a new mammo that afternoon (last mammo was less than 2 mths old and was as usual).  Turned into an US and biopsies immediately.  Path report the next morning at 8 was as expected - IBC.  In the next 17 days til I started neoadjuvant A/C, my breast (and node) did enlarge, nipple inverted, and peau d'orange developed.  I never had any  redness/rash or pain.  

    Remember we are each unique and some do have redness/rash with IBC - but not all.  There are many possibilities for redness that have nothing to do with IBC (or other types of BC).

    A couple of things to remember about IBC - it is rare, only between 1% - 5% of all DXd BC.  It is aggressive/rapid in presentation - often literally over night (me) but does not 'hang around' a long time without continually 'showing' its progression.

    You've had a change - talk to your Dr.

    Winyan - The Power Within

    Susan

  • GlowMore
    GlowMore Member Posts: 789 Member
    #7
    Rague said:

    Call your Dr and talk to

    Call your Dr and talk to her/him about the changes.

    In my case, the first 'sign' was a lymph node that enlarged to the size of an almond literally overnight - not there one night but there the next.  My PA was on vacation so it took me. A week to see her (I didn't want to see anyone else).  In that week, it did enlarge and she sent me for a new mammo that afternoon (last mammo was less than 2 mths old and was as usual).  Turned into an US and biopsies immediately.  Path report the next morning at 8 was as expected - IBC.  In the next 17 days til I started neoadjuvant A/C, my breast (and node) did enlarge, nipple inverted, and peau d'orange developed.  I never had any  redness/rash or pain.  

    Remember we are each unique and some do have redness/rash with IBC - but not all.  There are many possibilities for redness that have nothing to do with IBC (or other types of BC).

    A couple of things to remember about IBC - it is rare, only between 1% - 5% of all DXd BC.  It is aggressive/rapid in presentation - often literally over night (me) but does not 'hang around' a long time without continually 'showing' its progression.

    You've had a change - talk to your Dr.

    Winyan - The Power Within

    Susan

    Hey Thanks**

    Hey Thanks....I forgot to get back to ya.         I'm in that place where I just don't want to go back to the docs.......but I definitely will if it changes more.......my new Onc cut me loose until Jan 2016 and I just hate to go there before that.

    I'm great at giving advice but hate to take it ha ha.............anyway....this new Onc last Dec told me that at my age and with the amount of time I have survived now...that the likelihood of this turning up from the original BC is very low.

    He said I had more of a chance of getting an entirely new cancer .........that being said however...he is pretty young guy and not as experienced as my Onc who retired.      I've reached the age of knowing I don't have a heck of a lot of years left anyway.......and I'm just praying I can go out calmly and not back in the Survival Battle with all the tests and meds etc.   you know?          Prayers for Strength & Courage...........hope your Winter is gone by now....we had 90 degrees here yesterday in my driveway.   Glo

  • kabanfield
    kabanfield Member Posts: 5
    #8
    Denii said:

    Survivor

    Hello Lileva,

    Im sorry you get to join our group of survivors...

    but Im here if you would like to talk. Im a 10 year survivor from treatment.

    I know it is said your a survivor from diagnosis but for me...its from last 

    day of treatment.  Cool

    Denii

    looking for hope

    My mom just found out she has Ibc that has Mets to her lungs and liver. I am trying to understand if the treatment options the Dr has given are the right ones.

     

    Any help is appreciated.

     

    Karey

  • Rague
    Rague Member Posts: 3,653 Member
    #9
    kabanfield said:

    looking for hope

    My mom just found out she has Ibc that has Mets to her lungs and liver. I am trying to understand if the treatment options the Dr has given are the right ones.

     

    Any help is appreciated.

     

    Karey

    What options given?

    What options were given?  Remember that IBC is rare so there aren't a lot of us around. With or without mets.

    Winyan - The Power Within 

    Susan

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