Inflammatory breasr cancer

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  • DanaML
    DanaML Member Posts: 3
    edited October 2006

    After reading several different post I have a question about IBC. I had two lumps removed (from same breast, exactly one year apart). Both came back negative. One was called a fibro-edenoma, the other the dr. said was a "cluster of cyst" that made it a hard lump. After reading the responses that everyone has given Sarah, I'm kinda scared..... Can you have IBC and both biopsy of lumps be ok? Is there a special test for that particular type of cancer that has to be performed? I'm just asking because my breast is ALWAYS "thicker and more dense" and I often have alot of shooting pain in it. Would appreciate any info. Thanks, Dana

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  • SUSANKO
    SUSANKO Member Posts: 4
    edited October 2006
    Hi everyone, I was diagnoised with the dreaded IBC 9-29-06, what a day, well anyway, I have had my first round of chemo and was wondering what I should expect for side effects after another round or two. Next round will be 10-27
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  • jasmine
    jasmine Member Posts: 1,286
    edited May 2008

    Post deleted by Jasmine

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  • SUSANKO
    SUSANKO Member Posts: 4
    edited October 2006
    I am on FEC right now, 24 hrs after they give me a Neulasta shot for my white blood count. My next chemo is on 10-27, I am trying to eat healthy and walk every day time allows. It really is the not knowing what to expect is what haunts me the most. That is why I am asking for advise, & answers.
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  • SUSANKO
    SUSANKO Member Posts: 4
    edited October 2006

    How many treatments of chemo did you do? Are you going to do radiation after surgery? Or is that why you are taking the meds, this is all so new, please forgive me I don't have the knowledge of everything yet.

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  • jasmine
    jasmine Member Posts: 1,286
    edited May 2008

    Post deleted by Jasmine

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  • SUSANKO
    SUSANKO Member Posts: 4
    edited October 2006
    I was directing my questions to you Jasmine if you don't mind sharing stories with me, it just helps to know what I am kinda in for. I am confused now, did or did you not have breast cancer, I thought you did.
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  • countrygirl18-2006Oct24
    countrygirl18-2006Oct24 Member Posts: 3
    edited October 2006

    HI I just want to say I had IBC 13 years ago and then got it in the other breast about 3 years ago and returned to a normal life and living but last year I was diagnoised with a brain tumor and guess what i survive again. it will be a year on 11/11 and i pray and thank god everyday that i have the strengh and courage from him to get me well and have a wonderful life everyday no matter what im doing so keep it up ladies and enjoy your full life don't worry just enjoy your life healthy.

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  • countrygirl18-2006Oct24
    countrygirl18-2006Oct24 Member Posts: 3
    edited October 2006

    One thing I will say Im not sure but the first IBC I had when I was 32 years old and then I had breast reconstruction when I turned 40 actually i had the surgery on my 40th birthday. 5 years ago well anyway then 2 years later I got the second breast cancer inflammatory and 7 months after that I had another reconstruction of the left breast. After that the brain tumor occured. It just seems that I went like 8 years without any occurance and then after the reconstruction surgery I had another breast cancer.

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  • countrygirl18-2006Oct24
    countrygirl18-2006Oct24 Member Posts: 3
    edited October 2006

    I do have a question for anyone that had metastic disease did you receive any herceptin and how long where was the reacurrance. thank you for listening countrygirl18

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  • luvschaack
    luvschaack Member Posts: 1
    edited October 2006
    FYI - I found the transcript here on the BC.org from the "Ask-the-Expert" Conference a really informative read. There were some great questions and answers.
    Some of the statistics are not so good - but - I know I am not a statistic. And let's face it - with a diagnosis of IBC- we know the odd's are against us.
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  • iwuzbald
    iwuzbald Member Posts: 2
    edited November 2006
    I am a 7 year survivor of ibc, stage IIIB. There are MANY long term survivors of ibc. You may want to check out an on-line support group for women with ibc only. Its: www.ibcsupport.org

    Take good care,

    Mary Ann
    chemo hats: www.cjhats.com
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  • txred9876
    txred9876 Member Posts: 392
    edited November 2006
    Yes there are many long term survivors and with education such as the news clips they ahve been doing all over the countyr we are getting much more support to find

    My story is, for on the page at www.kxan.com but if they move it you should be able to search for the segment in the upper right corner using "silent killer"

    It is somewhat graphic in nature in spots but is necessary to get the word out.

    Tina Cross
    IBC DX 8/2005
    AC DD X 6
    Double mastectomy Dec 1, 2005
    Taxol started end of january for one month, stopped due to heart issues. Heart impacted from 60% down to 42% so on to meds to help strenghen my heart.
    Finished last 8 weeks of Taxol the first week of June. Started on 5 years of Tamoxifen in July 06.
    Herceptin was still on hold until last yesterday now I will have it every three weeks for the next year. Along with bone and CT scans every 3 months and followup echos every 2 months while taking herceptin.

    PS..I am overall very good....the only real complaint is the neurapathy in my feet...but they got good stuff to assist with that....if you have problems see a pain managment specialist. Mine made all the difference.

    My next step is to get the first week in oct (during breast cancer awareness month) designated inflammatory BC awareness week. One state has passed the bill and 4-5 others are working on it. I will be workig on it here in TX. Once there are 10 total passed...then the senatorfrom washington state will take it to a national level.
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  • LittleWillow53
    LittleWillow53 Member Posts: 1
    edited March 2007
    HI,
    YES, I'M A SURVIVOR SINCE 2004. MY AGE IS 53. I WOULD LIKE TO ASK YOU SOME QUESTIONS? PLEASE RESPOND BACK IF YOU WANT TO TALK?
    THANK YOU,
    LITTLE WILLOW (FROM IOWA)
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  • codylynn
    codylynn Member Posts: 11
    edited March 2007
    I'm in my early 50's and have had IBC for about 6 years - most of that time untreated due to misdiagnosis (don't get cancer in Wyoming...I now go to a cancer center near Denver). I have not had surgery, chemo, rads and the only med I was on was Tamox. - for maintenance I believe. I have since quit that due to severe side effects.
    I'm stage 3, ER/PR+, HER2-. I'm not sure where I'll go from here and it seems like the docs I encounter have no idea what to do with me. No one can find-for sure-where anything has spread, no one can tell me what to expect since I've been told that "you don't fit the mold". Anyway, yes ladies, there is life after diagnosis. IBC is not an automatic death sentence. Good luck to you all.
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  • jasmine
    jasmine Member Posts: 1,286
    edited May 2008

    You might try to get into the new Inflammatory BC Clinic at MD Anderson in Houston, TX. They just opened it last October I think. Maybe you can get some good guidance with a consult from them.

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  • topztkru12345-2006Dec29
    topztkru12345-2006Dec29 Member Posts: 12
    edited March 2007
    hey!!!
    At december, 12-2006 i was diagnosed with IDC with mucinous differentiation (carcinoma with focal nonmucinous infiltrating ductal carcinoma). The tumor is low-grade. I got 2 of them , size 13mm. This is estrogen positive, her2 gene scored '0'. I am on Arimidex from january, 18 2007 and relativly restricted diet. The tumors are shrinking. Tomorrow I am going for second observation for med resalt. I am confused what my DX mean in english. Someboby can help?
    Thanks, Lialia
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  • teacheng1
    teacheng1 Member Posts: 20
    edited March 2007

    Lialia, Dx means "diagnosed." I think I remember seeing on the main index a forum for IDC. Take a look. It might offer the support you need. Best of luck!

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  • teacheng1
    teacheng1 Member Posts: 20
    edited March 2007

    Hello to all. Have a question. I've read that IBC presents different ways in different women. I even read a post somewhere that someone didn't have the classice symptoms and was accidentally dx with IBC! So this is my question: could a breast with only a slightly bruised look about the size of a half dollar piece and with a thickened painful area in a different part of the breast and soreness under my armpit be indicative of IBC? There is also some swelling up the left side of my breast. The pain is not cyclical in nature. I'm not trying to jump the gun here. I've got a doctor's appt with a breast specialist. Just trying to find out all I can. Thanks for any response.

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  • erika-canada
    erika-canada Member Posts: 142
    edited March 2007

    Post deleted by erikaerl

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  • teacheng1
    teacheng1 Member Posts: 20
    edited March 2007

    Hey Erica, I think you meant to post to Lialia. My question was about the varying appearances of IBC. If you don't mind, take a look at my post (right before your response) and see if you have any thoughts. Thanks!

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  • topztkru12345-2006Dec29
    topztkru12345-2006Dec29 Member Posts: 12
    edited March 2007
    Hey, girls! sorry, I made type error. I was ds with IBC. I am nerves and did not read post againe. I recover my by accident. No listed symptoms, just one time pain in my left breast. I try to comfort breast with different positions and got hard mass. So simple! I did sow dr at may (family dr) and had nothing.
    Lialia
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  • jasmine
    jasmine Member Posts: 1,286
    edited May 2008

    Lia, according to your post you do not have Inflammatory breast cancer (IBC). It sounds like you have Invasive Ductal Carcinoma (IDC). IBC is an automatic stage 3B, extremely agressive, and the standard of care is months of chemotherapy, mastectomy and radiation.

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  • topztkru12345-2006Dec29
    topztkru12345-2006Dec29 Member Posts: 12
    edited March 2007
    I very like yours nick name on web, AlwaysHope. that samething all of us have to had.
    I copied my dx from pathology report. If this is not IBC i will breath better. I saw my onk today. The tumor still shrinking, but he did not say what size it now. I will have control test MMG and UltS at may and will post resalt. In mean time, dr is talking abouit radiation after surgery (plan in june)
    thanks for all information
    good luck for all and everyone of us
    L:ialia
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  • jasmine
    jasmine Member Posts: 1,286
    edited May 2008
    Lai, I think you can definitely breathe better! It sounds like your treatment is effective and best wishes for your tests.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2007

    Post deleted by bco-administrator

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  • Ontario
    Ontario Member Posts: 99
    edited March 2007

    back to topic. Moderators notified

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  • mjander
    mjander Member Posts: 1
    edited April 2007

    Hello, I was diagnosed with ibc on March 19,2007. I have a had two chemo treatments, bone scan, lung xray, and liver ultra sound which all came back that there is no signs of cancer there. I would love to hear any encouragement with this disease, everything I seem to read is so negative, but I am a positive person. I plan to beat this cancer and live for many more years. I have a wonderful supporting husband, 3 wonderful children that need me. Thanks

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  • topztkru12345-2006Dec29
    topztkru12345-2006Dec29 Member Posts: 12
    edited May 2007
    Hey all!!
    Happy mother's day
    I did mammo and ultra on may 7. One of my mass did shrink atleast 50%, but 2nd remain same. On the mammo looks diffrent for me, but dr sure is same. Have plan to go for surgery on 24 of may. Not sure I need it.
    Good luck for all
    Lialia
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  • CFM5864
    CFM5864 Member Posts: 1
    edited May 2007

    Hi, i dont have cancer but my mom was diagnosed 10/06 she is 62, i stayed with her for6 onths of chemo, she lives in ohio i live in illinois,she had a full radical right modifyed mastactomy, now she is going through 12 more weeks of chemo & radiation, i will be returning to be with her in a couple of weeks, she gets so depressed, i really dont know what to say except that i am real scared for her i dont let her know, i support her through all the pain and misery she is going through, she has IBC, i am her only daughter so i left my family to be with her, i love her so much, reading things on the internet is real scary, the way it can come back or spread, i just dont know what to do anymore, i have held so much inside me that i have bad dreams, i feel lost and hopeless, i feel selfsish at times, and most of all i hate this disease that has robed my mom of a good like, she has always had a hard life and now this. i just wanted to let some one know that there is another wonderful woman of the world out there with IBC. she has good days and then real bad days. she is going through the second round of chemo 1 day a week now. I thank God the cancer has not spread. my grandmother died of breast cancer and my aunt had cervical cancer, and now they think her cancer came back, i am worried for my self, but dont have the insurance or time to get checked, i have to go back to my mom, she needs me. just needed to talk. thanks for listening. Christine

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