New to the board with Inflammatory Breast Cancer

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  • susie09
    susie09 Member Posts: 2,930
    #42
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    MyTurnNow said:

    Welcome, Texasgirl! I think
    Welcome, Texasgirl! I think we were all in the same place you are now when we were first diagnosed. It is terrifying and something I thought would never happen to me. But, it did and I have finished all treatments that included, surgery, chemo and rads. So, it is scary now but before you know it you will be through your treatments as well. You have an amazing support system here. I don't have the same type of bc but there are several sisters here who do. Continue to ask questions and someone will come along to provide their experience and help you. Good luck and let us know how things go. (((Hugs)))

    Sorry if I am late in
    Sorry if I am late in welcoming you, so, welcome Texasgirl! I hope that you will ask any questions and post often.


    Good luck!
  • dbhadra
    dbhadra Member Posts: 344 Member
    #43
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    smalldoggroomer said:

    Welcome Texasgirl,

    Welcome Texasgirl,
    I also have IBS ( Inflammatory Breast Cancer ) I was Dx's May 4Th 2010. I had chemo ( Herceptin taxotere carboplatin ) 6 rounds every 3 weeks. My tumor was large about 2X3 inches right breast. It came up fast as IBS can do. I was swollen red and very sore. But by the time I got to the 3rd chemo I could not find the tumor any longer. Nor could my Dr. After chemo was over I had surgery ( Modified radical mastectomy right side )When the pathology came back there was NED ( No evidence of disease )I still have to do Radiation but I have been declared cancer free. and in the beginning I was told it was a very aggressive cancer but they would do there best. so try not to get to scared it does get better. You will learn allot here And we will all be here for you all the way. What ever you need just ask and you got it.
    If I can help please let me know Take care darlin Kay

    IBC - diagnosed Dec 16, 2010
    Hi all:

    I'm so glad to find others on this board with IBC - I wish none of us had this horrible disease but since we do I am glad to have the support here.

    My story - haven;t put it down yet in the About Me so briefly -

    went to my ob/gyn with slightly red right breast on Dec 3 - no big deal, right?

    Luckily they were on it immediately - got test after test - two negative biopsies followed by one positive one - diagnosed Dec 16 - started chemo Jan 7 - 12 rounds of taxol weekly followed by 12 weeks of FED followed by surgery followed by radiation...wow! a lot to absorb in just about a month since this long strange trip began!

    New to the boards as of today so reading many of your inspiring stories!

    Late and tired and legs aching so time for ES tylenol and bed!

    Laura Jean
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #44
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    sorry you are going through this
    HOnestly I am no clue what inflammatory BC compare to others. I"ll be thinking of you...

    JOURNALS helped me !
  • jessica80
    jessica80 Member Posts: 11
    #45
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    Ibc Yuck!!
    Im a stage 4 IBC patient!!And a good attitude is what you need!! I think everyone gets terrified and thats ok!!You will find so many great people on this site that will talk you through lots and can answer pretty much anything you have a wonder about!!I would like to tell you though I never got sick not one time I was very tired at first but that kinda wore off the more I got use to it!! It took almost 8 months for me to lose my hair!! I am so sorry that you have been struck with this nasty cancer but be strong FIGHT LIKE A GIRL AND YOU WILL DO GREAT!!

    Lot of hugs sent your way
    Jessica
  • dbhadra
    dbhadra Member Posts: 344 Member
    #46
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    jessica80 said:

    Ibc Yuck!!
    Im a stage 4 IBC patient!!And a good attitude is what you need!! I think everyone gets terrified and thats ok!!You will find so many great people on this site that will talk you through lots and can answer pretty much anything you have a wonder about!!I would like to tell you though I never got sick not one time I was very tired at first but that kinda wore off the more I got use to it!! It took almost 8 months for me to lose my hair!! I am so sorry that you have been struck with this nasty cancer but be strong FIGHT LIKE A GIRL AND YOU WILL DO GREAT!!

    Lot of hugs sent your way
    Jessica

    Lots of questions on IBC
    OK, here is my question - how do I actually know if I have IBC? I have one negative skin biopsy, one positive skin biopsy, some swelling, some redness, an inverted nipple, a 3 by 2 centimeter lump/mass and a cancer with "lobular features"!!!????

    My oncologist keeps telling me that IBC is a "clinical diagnosis" meaning, if you are inflamed, you are classified as IBC. But, according to her, it doesn;t matter since I am ER+, PR+ and HER -, so treatment is the same whether it is IBC or "regular" breast cancer. But at the same time, everything I read says IBC has worse prognosis than other types of breast cancer.

    IS IBC really worse that other breast cancers???? And WHY???

    Also, I hate telling people I am Stage III (which I am classified as, both because of the size of my tumor and the skin inflammation). They look at me as if I am going to die immediately (or maybe I just imagine that they are) and then I end up explaining how even though it's Stage III, it's really not that bad, etc. etc. etc. Why do people even ask what stage I am, anyway? How does anyone else answer that question. Today I found a new way to cut short that discussion by simply saying, "My prognosis is good" (though I have not seen that written down anywhere on my numerous reports (and would like it in writing "excellent prognosis" would be even better!!!) I am still going to say it based on talks with my oncologist!!!"

    Thanks ladies for letting me vent here! Until I started writing I didn't realize how much was in there!

    2nd round of 12 weekly taxol tomorrow...one down, 11 to go!!!

    Wishing everyone a good night,
    Laura
  • pinkflutterby
    pinkflutterby Member Posts: 615 Member
    #47
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    dbhadra said:

    Lots of questions on IBC
    OK, here is my question - how do I actually know if I have IBC? I have one negative skin biopsy, one positive skin biopsy, some swelling, some redness, an inverted nipple, a 3 by 2 centimeter lump/mass and a cancer with "lobular features"!!!????

    My oncologist keeps telling me that IBC is a "clinical diagnosis" meaning, if you are inflamed, you are classified as IBC. But, according to her, it doesn;t matter since I am ER+, PR+ and HER -, so treatment is the same whether it is IBC or "regular" breast cancer. But at the same time, everything I read says IBC has worse prognosis than other types of breast cancer.

    IS IBC really worse that other breast cancers???? And WHY???

    Also, I hate telling people I am Stage III (which I am classified as, both because of the size of my tumor and the skin inflammation). They look at me as if I am going to die immediately (or maybe I just imagine that they are) and then I end up explaining how even though it's Stage III, it's really not that bad, etc. etc. etc. Why do people even ask what stage I am, anyway? How does anyone else answer that question. Today I found a new way to cut short that discussion by simply saying, "My prognosis is good" (though I have not seen that written down anywhere on my numerous reports (and would like it in writing "excellent prognosis" would be even better!!!) I am still going to say it based on talks with my oncologist!!!"

    Thanks ladies for letting me vent here! Until I started writing I didn't realize how much was in there!

    2nd round of 12 weekly taxol tomorrow...one down, 11 to go!!!

    Wishing everyone a good night,
    Laura

    I get the same looks Laura,
    I get the same looks Laura, I am stage IV with mets to my CF fluid & bones. Was in my liver but GONE from there Ü. I really hate it when people say I will pray for you, you will need it. I'm like HEY you could of left off that last part!!!! We all need prayer cancer fighters or not!

    I always say I am stage IV but doing really well with the treatments and that I plan on beating the beast and being a medical miracle and I DO!!!!

    And other fellow Texans, for those that dont already know, I am also in Texas, Fort Worth area Ü
  • dbhadra
    dbhadra Member Posts: 344 Member
    #48
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    pinkflutterby said:

    I get the same looks Laura,
    I get the same looks Laura, I am stage IV with mets to my CF fluid & bones. Was in my liver but GONE from there Ü. I really hate it when people say I will pray for you, you will need it. I'm like HEY you could of left off that last part!!!! We all need prayer cancer fighters or not!

    I always say I am stage IV but doing really well with the treatments and that I plan on beating the beast and being a medical miracle and I DO!!!!

    And other fellow Texans, for those that dont already know, I am also in Texas, Fort Worth area Ü

    stages and comments
    totally agree - I;ll pray for you - is great - you will need it - not so helpful!!

    my all time favorite comment so far from one of my son's friend's mom who was cleared very flustered when I told her about my diagnosis "oh, I had a friend in college who died of breast cancer when she was 28"!!! - sorry - SOOOO not helpful! She quickly followed up by saying that her sister-in- law had had breast cancer and was doing really well, though...I think people just don;t know what to say.

    I;m not even sure that I need to answer what stage I am since people without cancer experience think Stage I is good and Stage IV is bad...but clearly it's much more complicated than that and there are so many factors that impact how well each individual does. I am not a statistic!

    Wishing all a good night,
    Laura
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #49
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    dbhadra said:

    IBC - diagnosed Dec 16, 2010
    Hi all:

    I'm so glad to find others on this board with IBC - I wish none of us had this horrible disease but since we do I am glad to have the support here.

    My story - haven;t put it down yet in the About Me so briefly -

    went to my ob/gyn with slightly red right breast on Dec 3 - no big deal, right?

    Luckily they were on it immediately - got test after test - two negative biopsies followed by one positive one - diagnosed Dec 16 - started chemo Jan 7 - 12 rounds of taxol weekly followed by 12 weeks of FED followed by surgery followed by radiation...wow! a lot to absorb in just about a month since this long strange trip began!

    New to the boards as of today so reading many of your inspiring stories!

    Late and tired and legs aching so time for ES tylenol and bed!

    Laura Jean

    Welcome Laura Jean to this
    Welcome Laura Jean to this great site full of pink sisters that will give you support, encouragement and lots of cyber hugs.

    I am sorry about your diagnosis. But, let us help you however we can.


    Sending you prayers and good luck with your treatments.


    Diane
  • aysemari
    aysemari Member Posts: 1,596 Member
    #50
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    Welcome amongst our midst!
    I owe my sanity to this board. You will find that you can come here with
    any question or concern and find understanding and support.

    It's only natural to be terrified and we all share your fear and know exactly
    where you are coming from.

    The spirit of this board is amazing, I learned everything I needed to know
    about the ups and downs of this journey from this board.

    Hugs,
    Ayse
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #51
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    Texasgirl10 said:

    I have hope
    Hi ladybug, Ya'll have given me tons of hope. I am excited to hear the success stories from everyone here. I can't wait to hear the words " you are cancer free" & I will hear those words :) Thank You for making my night brighter

    Texasgirl, you will hear
    Texasgirl, you will hear those words Cancer Free! We all will!

    Hugs, Diane

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