Convinced I have IBC, Help!

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coyotedesert
coyotedesert Member Posts: 4

Hi, I am convinced I have IBC. The symptoms are just too perfect to deny. I woke up on Monday to a sore left breast and red skin just below the areola. I went to urgent care that night because I just didn't like what I was seeing. Of course I was prescribed antibiotics for infection and have been taking them faithfull but I am very concerned. My left breast is still swollen, it now produces clear discharge, and then the lymph nodes in my armpit and above my collar bone became swollen. This is the exact path IBC often takes, and I just can't get anyone to take me seriously. I want a punch biopsy ASAP! This particular cancer can spread in days and so I don't want to wait a single second. Any advice on what I can do to speed the process up? Most doctors just don't know what they are looking for with IBC. Help!

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  • alicki
    alicki Member Posts: 661
    edited September 2013

    Hello, 

    I'm not in the US but you can contact a IBC clinic, there's one in Texas, MA Anderson. It might be far from where you are, but don't wait. Meanwhile, stand in the middle and remember you can have all the symptomes of something, and it can be something else.

    I'm going in for a second biopsy tomorrow (at my insistence), I have slight skin thickening, slight breast enlargement and very slight edema, classical signs too, but I have had two negative MRIs, 6 negative ultrasounds, 1 negative biopsy, one C-15-3 test (which I had done directly at a lab) 5 clinical examinations and 1 very top notch Breast oncologist doctor (the 5th best in the UK, and 25th in the world) telling me it's not that but a episode of mastits  with inflammation of lymphatic channels(I was in pain for 5 weeks, not treated with antibiotics) and redness (now gone). 

    I'm telling you all this because, you are 100% right to get this checked out, but give yourself the possibility to stand in the middle, it can be other things too. 

    And just so you don't get more worried, when they do the biopsy, your lymph nodes in your armpit will swell and so will your breast, just so you know and don't freak out like I did.

    So, since you seem to be in the US; (I don't have that luck), go the IBC clinic or a clinic they know what they are looking for and get it checked. Or do like me, ask your dermatologist.

    Let us know what happens.

    Best to you,

    Alicki

  • Kicks
    Kicks Member Posts: 4,131
    edited September 2013

    Not everyone reacts the same as anyone else does.  I did not have any swelling,discomfort or bruising after my biopsies (FNB).  We are each unique and while there are often similarities  - it is impossible to make the assumption that everyone will have the same experiences as 'you' have had.

  • alicki
    alicki Member Posts: 661
    edited October 2013

    Hello kicks,



    That is 100% correct, my apologies for the over generalization



    Thanks for pointing that out

    Alicki

  • coyotedesert
    coyotedesert Member Posts: 4
    edited October 2013

    Going in to he breast imaging center in my city for a mammogram and ultrasound on thursday and then will be talking to a breast surgeon on Friday about the results. Still very worried but hanging in there! Wish me luck!

  • MmeJ
    MmeJ Member Posts: 167
    edited October 2013

    coyotedesert, all those symptoms appeared in one day?



    Have you completed your antibiotics course? What did the prescribing doc say s/he think it might be? Infection from bug bite, allergy? Has anything changed since you've been on them? Are you doing better? Hope so.



    Diagnostic processes vary over the country (are you in the U.S.?), but I wonder why you were granted an appointment with a breast surgeon the day after your mammo and ultrasound, before you have a diagnosis - which we all hope you don't.



    I'm not an IBC patient, just responsive to this flavor of anxiety and write if I think it might help.

  • coyotedesert
    coyotedesert Member Posts: 4
    edited October 2013

    Had the mammo and untrasound today. The radiologist didn't seem concerned at all but I am not buying it! He showed me the mammos and the left breast tissue definitely looked denser to me and that is the breast I am concerned about. I finish my antibiotics today and they caused the redness and swelling to go down but I was on very hardcore antibiotics that are known to reduce swelling/inflamation even if there is no infection. Yes  I am in the U.S.. I got an appointment with the surgeion just by being an advocate for myself calling around, pleading my case and eventually getting in. Luckily the doc I am seeing tomorrow did his fellowship at MD Anderson where they have the IBC clinic so I am hoping he will have a better idea then anyone I have talked to so far. I'll let everyone know how the appointment goes tomorrow!

  • KristensMom
    KristensMom Member Posts: 1
    edited November 2013

     Hi I  was just wondering how your appointments went?  And  kudos 

    to you for advocating for yourself.  We should always trust our instincts !  My daughter was diagnosed with ibc oct 2012  at age 29 .  Over the past year we have heard many stories  of women who went against their  gut feelings and believed in their drs .... some who turned out not to have ibc  thankfully,  but many who did have it.  Good luck and  prayers to you! 

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