How is IBC diagnosed?

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MissyBraddy
MissyBraddy Member Posts: 87
edited June 2014 in IBC (Inflammatory Breast Cancer)

I was diag. in Nov. with stage IV IDC. and have been on treatment since then I am triple neg. and on taxol/avastin/zometa. (spread to liver and bones). My breast is soooooooooo painful, it oozes, itches, completely inverted nipple, and the "orange peel" look. I have had so many bc women tell me to get another opinion because it sounds like IBC to them! I looked up some pictures of breasts today online that were IBC, and mine looks JUST like them! Also, I had a baby in Sept, and 3 weeks later I found the lump, and at my 6 week check-up, it had grown even bigger......and look how fast it spread to my liver and bones! These are ALL characteristics of IBC.....right?! I'm beginning to think I have been MISdiagnosed ladies!

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  • lexislove
    lexislove Member Posts: 2,645
    edited March 2009

    Missy.....

    You might be on to something. You NEED a second opinion. Please keep us updated.

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited March 2009

    missy,

    Aggressive IDC with clinical symptoms such as orange peel, inverted nipple and redness over one third of breast is IBC.  IBC is a clinical dx not just a pathological dx.  The treatment for Locally advanced or metastic IDC and IBC are the same.  Have you been on the chemo you are on all the time, have you had AC, 

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  • MissyBraddy
    MissyBraddy Member Posts: 87
    edited March 2009

    I don't have the redness on the breast, at least not very bright..does look a little big red sometimes. Yes, I have been on the same chemo from the start. What is AC? I'm actually going to Scottsdale Az at the end of April, to a breast center that gives free 2nd opinions. This will actually be my 3rd opinion. MY actual 2nd opinion didn't give me any hope....it was horrible. On top of that, it was my 35th birthday! Jerks! LOL

    Thanks so much for your help ladies. Hugs & Hope!

    Missy

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

    Adriamycin & Cytoxan.  I would really push for Ixempra with Xeloda.  A lot of us triple negatives responded well with this tx.  AC is not showing all the much promise for us.  I also had a good response with Gemzar, Carbo & Avastin. 

    Hope you find the correct chemo soon that will kick this in the butt.

    Flalady

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited March 2009

    I agree with( seems like always saying this) with Flalady.  I was asking about the AC because the "standard" treatment has been AC and Taxol  with Avastin being used more and more.  Ixempra with Xeloda..gave the best response with my wife..and like Flalady, Gemzar, Carbo Avastin did well,  she did have good results with the TAC plus avastin, but the Ixempra gave the most notable results...while on it, she got to the no apparent disease stage.  I wish you nothing but good from your new second opinion and treatment. 

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  • MissyBraddy
    MissyBraddy Member Posts: 87
    edited March 2009

    thanks for all the wonderful advice ladies (and gent :) ) I will keep ya's posted with my 2nd opinion. Hugs!

    Missy 

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  • sue3645
    sue3645 Member Posts: 21
    edited March 2009

    No additional advice, Missy, just thoughts and prayers!

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  • MissyBraddy
    MissyBraddy Member Posts: 87
    edited April 2009

    Well, get this! I went to see my onc this past tuesday, and he now has a PA working with him. She gave me an exam....saw my breast, asked me questions about it, and said "looks like IBC to me" I KNEW I wasn't crazy. My appt. for my 2nd opinion in Az was pushed up to May. I am having scans in 2 weeks (CT, bone, and PET). Then on May 22nd, I fly to Az. I'm really hoping they say it's ok to remove this breast, I just can't take the damn pain anymore....constantly in pain, and getting to the point that my vicodans don't really work on it anymore, ugh. This is my 5th round of chemo, and this breast hasn't really shrunk at all. It's still HUGE. I'm just soooooooooo frustrated! OK, thanks for letting me vent, LOL. I'm going to bed to hopefully have sweet dreams :D

    Hugs & Hope to all 

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  • lexislove
    lexislove Member Posts: 2,645
    edited April 2009

    Missy,

    I'm glad you have your answer finally!!! and that you are NOT crazy...lol

    this just proves that woman have to be their own advocate. I hope that you can remove the breast, I wouldn't see why not.

    P.S. your little girl is precious! Smile

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  • Alaina
    Alaina Member Posts: 461
    edited April 2009

    My oncologist told me it was a "clinical diagnosis" for me as well, and that because I was doing chemo before surgery (because cancer was already in one lymph node) it might not possible to know if I actually HAVE IBC until after they remove the affected breast and can get a full pathology on it.  They were hesitant to do a skin-biopsy of the thick-pocked-marked-area of my breast because  they said it's really easy to get a "false-negative" with IBC, meaning just because it didn't show up in that particular area they chose to sample wouldn't necessarily mean I didn't have it.

     Given the diagnoses they are positive about (Stage 0 DCIS, Stage III IDC), my treatment plan (aggressive) is designed to fight IBC if in fact I DO have it.

     But it can be nerve-wracking not knowing for sure, especially since IBC is so darn scary!

     Best wishes as you navigate all this!  In many ways, I'm right there with you!  Just keep asking questions and keep pressing forward!

     Alaina

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  • lovemyfriend
    lovemyfriend Member Posts: 35
    edited April 2009

    To MissyBraddy,

    Can you give more information on the clinic in Scottsdale AZ that gives free 2nd opinions please.  My friend who was diagnosed just recently with IBC could use a second opinion.  Thanks.

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  • Reen517
    Reen517 Member Posts: 13
    edited April 2009

    MissyBraddy: I was dx'd with IBC in March of 2001. You definitely have a lot of the symptons that could possibly be IBC. I don't want to scare you, but the quicker you get dx'd, the better your chances are. I was fortunate enough to have a breast surgeon who was familiar with IBC, (unfortunately, most are not), so I began treatment right away and I am still here, 8 yrs later:-)  I will keep you in my prayers. Please please get that 2nd opinion right away. IBC is too aggressive to wait. God bless you!

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  • MissyBraddy
    MissyBraddy Member Posts: 87
    edited April 2009

    lovemyfriend,

    here is a link to the institute. Hope this helps. Hugs!

    www.aibh.org/index.html
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  • lovemyfriend
    lovemyfriend Member Posts: 35
    edited April 2009

    MissyBraddy,

    Thank you so much for sending me this link.  What a great service this place is providing and what a great person you are as well as all the others who use this web site for support and information.  God bless you all.

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  • 1scaredmom
    1scaredmom Member Posts: 3
    edited May 2009

    Hi I was just reading your post and wanted to ask you for an opinion...I had a mass removed in Dec 2008 because a biopsy showed entrapped a typia cells in the nerves of the tissue.  The biopsy came back that no a typia cells were present.  I have now had three rounds of antibiotics because my breast keeps getting red and infected they say.   The antibiotics help but then about 4 to six weeks later the infection is back again this time half the breast was red.  My doc has now ordered a MRI of the breast because it is very rare for this to be happening.  They even said the last infection was mastitis but I am not lactating my youngest is 4.  I am in consant pain in my left breast still and the same infection appears to be coming back.  My husband has read that some people have had this same experience to only be dx with IBC later.  What do you think?  Would a MRI show it if it is?

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  • 1scaredmom
    1scaredmom Member Posts: 3
    edited May 2009

    Thank you so much....I am scheduled for the MRI tomorrow morning so if that doesn't show anything I will discuss with him about the PET scan...I lost my brother to Pancreatic cancer in August 2008 and that is the test(PET) that showed his cancer as well.....

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  • 1scaredmom
    1scaredmom Member Posts: 3
    edited May 2009

    I hope things go better for you soon!!!!!!!!!    Thank you!

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