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milyla
milyla Member Posts: 5
edited June 2014 in IBC (Inflammatory Breast Cancer)
Would like to know....
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  • milyla
    milyla Member Posts: 5
    edited March 2008

    Hi,

    I am 38 years old and have a family history of breast cancer. My gyn has been sending me or yearly mammograms for 2 years now because of history. I was dx as having dense breasts or fancy term of fibrocystic breast disease about two years ago. I have had pain in my right breast for at least eight years. But things have changed, and I not only have the burning pain, but I have a swollen puffy area along my ribcage under my right breast, this hurts and pulls slightly, also feels like the underside of same breast tissue is getting hard. This and my many complaints prompted my Gyn to send me to a Breast Surgeon for a second opinion.(He thinks I am too young for bc, and I have had to shove my symptoms down his throat) I had mammo last week  and it showed nothing. Although she did my left breast seven times because she saw something that she ended up saying was probably just folded tissue.

    While I am waiting to see the surgeon (I go on the 24th) I have now developed a large swollen "puff ball" just above my collar bone. My left nipple is starting to invert when I put my arms behind my head, or am lying down. I have a small pink patch on my left breast as well. Skin around nipples is puffy. My left breast is swollen and larger than my right now. The swelling on my collar bone is beginning to hurt, feels sort of like muscle strain in shoulder and neck.

    What I would like to know is has anyone else out there had anything similar with swollen lymph node and IBC. I have read so much about the symptoms of IBC, and know that the lymph nodes do swell above the collar bone, but have yet to read anything describing it, or anyone saying that they had that. Same with the mass along my ribcage.

    I am terrified about going to the surgeon, but at the same time I need to know what is causing all this so I can deal with it.

    Thanks in advance,

    You guys are my inspiration, and my heros!

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  • NONE62661
    NONE62661 Member Posts: 57
    edited May 2008

    MILYLA,

    I JUST READ YOUR POST AND AM GLAD YOU ARE GETTING HELP.

    I KNOW IT DOESN'T SEEM LIKE IT FROM READING THE POSTS HERE AND ON OTHER MESSAGE BOARDS - BUT IBC IS RARE, AND THE PROBLEMS YOU ARE HAVING COULD BE FROM MANY OTHER THINGS.

    ALSO, THEY ARE ABLE TO TREAT IBC BETTER THAN EVER BEFORE - IF THAT SHOULD BE THE OUTCOME!

    OTHERS ON HERE CAN GIVE YOU MORE HELP THAN I CAN --- JUST WANT YOU TO KNOW YOU WILL BE IN MY THOUGHTS AND PRAYERS AS I HAVE JUST GONE THROUGH A MONTH OF TESTING AND WAITING AND I UNDERSTAND THE FEAR!

    GOD BLESS!

    JOAN

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  • shrink
    shrink Member Posts: 936
    edited March 2008

    See if you can move your appointment up.  This may not be IBC but if it is, you want to get treatment started quickly.  I had swollen nodes but they were in the axilla area not above the collar bone or in the rib cage.  You're not too young, unfortunately, to have BC.  Let's hope it's not.  Anyway, my right breast became pink, had bruising and swelled all within a week.  Please let us know what happened.

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited March 2008

    Milyla:

    I agree with Shrinki about moving up your appointment.  I too did not have any swelling above the collar bone or in the rib cage.  I only had swollen nodes in the axilla area.

    Keeping you in my prays.

    Hugs

    Laura

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  • lexi4
    lexi4 Member Posts: 1,074
    edited March 2008

    Definitely get an answer to what is going on. I would be concerned, but don't scare yourself. It could be many other things besides cancer.

    Big Hugs,

    Lexi

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited March 2008

    Your symptoms do sound worrisome, so do be proactive in finding out what is going on. I had swollen lymph nodes above my collarbone, under my arm, and along my sternum when I was dx with IBC. They radiated the crap out of them after chemo and surgery.



    Keep us posted, and I would try to twist some arms to be seen asap.

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  • sirsmom
    sirsmom Member Posts: 38
    edited March 2008

     I am really worried and could use some advice from some expert woman. I have some of the same symptoms of Milyla. My swelling began 2 weeks ago, right after I had a clean mammogram.  I saw my oncologist yesterday and he was very concerned. For this weekend they are are treating me for an infection although there is no clear cut reason why I would have one. I have been directed to call and come in this weekend if the swelling or redness increases at all.  I will be seen again on Monday. This is scary. I know that IBC is rare and I just finished aggressive chemo and radiation and I'm now taking tamoxifen. I remember my radiation oncologist asking me about IBC during our consult because my path report mentioned some skin involvement. That has never been my diagnosis. Can IBC come on that quickly, especially after treatment?

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  • milyla
    milyla Member Posts: 5
    edited March 2008

    Thanks to all of you for your responses. Unfortunately I cannot move up my date. So will have to wait one more week. I know something is wrong, and understand that it could be a great many things. I have been told by a great many people as well as the mammogram technician that I should be concerned about IBC. I was not really aware of IBC at all until last November. So I am trying to prepare myself in case. Hopefully it will be something else. I will keep you all up to date. Thanks for the hugs and prayers. I sure need them, as I am not allowed to talk about it at home.

    SirsMom, I know how frustrating this is. Hang in there.

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  • sirsmom
    sirsmom Member Posts: 38
    edited March 2008

    milyla, I wish you well. I think I am just experiencing an infection since the swelling has responded to antibiotics. I know how tough it must be for you to wait . I was told I had breast cancer in June by my surgeon who then told me she was going on vacation for 2 weeks. I think I gained 10 lbs from stress eating and drinking during that period.

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  • DianeE
    DianeE Member Posts: 176
    edited March 2008

    milyla,

    So sorry that you have to be going thru this stress.  Is the office you go to telling you that you can not move up your appointment?  Is there another MD you could see.  I would suggest calling back and begging to be seen earlier as you are concerned about IBC.  I not only work in oncology, but I do have IBC, and we would never have people wait with IBC symptoms.  I will keep you in my prayers that this is something else, and if very well might be.  In the meantime, force your way into an earlier appointment.

    Diane

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