Testing for IBC

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SandyInNj
SandyInNj Member Posts: 48
edited June 2014 in IBC (Inflammatory Breast Cancer)

I'm a 6 1/2 year survivor of Stage 1, IDC and Paget's disease of the left breast for which I had a single mastectomy. 

For the past 3 weeks, I'm having crazy itchiness, tingling, burning of the right nipple, and few episodes of shooting pain in the breast.  I also have these 2 small lesions on my aerola, which I've had for a very long time, and my breast surgeon always says they're nothing.  I've had this itchiness before, but it usually goes away in about a week, so I've never pursued it.  But the 2 lesions always become more irritated and slightly larger when I'm going through the itchy stage. 

I never had any of those symptoms with my first diagnosis of Paget's, just bloody nipple discharge.  And after reading some of the symptoms of inflammatory breast cancer, I decided I'd better get my butt back to my breast surgeon for answers this time. 

So I've made an appointment to see him tomorrow (2/24).

But I'm really not sure what tests he should be doing because I had a negative MRI the end of December (and clear mammo in August).  I'm anticipating him saying "you've recently had a negative MRI, so I wouldn't worry, it's probably just a skin irratation". 

Anyone been through this?  And what tests did they do to either confirm a diagnosis or rule it out?

Sandy

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited February 2009

    Sandy:

    I would ask the surgeon if he/she knows anything about IBC I would then request to have a biopsy done of that area biopsy are the only way they can rule out or confirm IBC. 

    Good luck tomorrow.

    Hugs

    Laura

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  • SandyInNj
    SandyInNj Member Posts: 48
    edited February 2009

    Thanks Laura, I'll post after my appointment today.

    I appreciate your input.

    One question, can they do this type of biopsy in the doctors office or would this be done in the hospital?

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  • SandyInNj
    SandyInNj Member Posts: 48
    edited February 2009

    Well, it went the way I figured.

    He examined me and said "I don't feel any lump and there's no discharge, I'll give you a creme to put on it to help with the itch".

    The itch is deep, it's like a nagging, prickly feeling, and it's relentless. I'm uncomfortable and it's distracting. 

    And I'm annoyed that I was practically dismissed.

    I've had cancer before, and I've had Paget's before.  I asked him if it could possibly bet that...but he said no it's not, just dry skin from the winter....

    Or...could it be IBC? and he said it's not that either, just seems like irratated skin...

    I asked him "don't you think it'd be a good idea to do a punch biopsy to just rule out cancer, you know, being I'm at higher risk and all?"

    Doc: "no, don't think we need to do that"

    He did ask that I bring by my MRI films to him and that he'll take it to the radiologist at his hospital to take a look at them together.  I wonder though, can something still be there now and wasn't necessarily there 8 weeks ago?  Probably not.  But I'm feeling that if he concludes from that MRI that my breast if fine, than I can't see him doing this biopsy.

    But I will see him again in 2 weeks, he wants to see if this creme helps and said he'd call me once he looks at my films.

    I just don't want to be sorry a year to so from now and wish that I'd been more aggressive in getting answers. 

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited February 2009

    Sandy:

    My surgeon took the biopsy in his office he has a minor surgery room it was done under a local anesthetic.  Once the area was numb I did not feel a thing.

    I would get a second opinion IBC is nothing to mess around with the sooner it is diagnosed the quicker treatment can get started.  Remember you are the boss and you know your body better then  they do.  If they do not respect your request they need to be fired.   

    Hugs

    Laura 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    You know, reading these nightmares just shows me how blessed I was to get such a wonderful breast surgeon/specialist.  I hope you find a new doctor and get a second opinion.  A biopsy is really the only way to tell.

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  • SandyInNj
    SandyInNj Member Posts: 48
    edited February 2009

    I figured it was something that could be done in the office.  So I'm wondering 'what is the big deal, just get a piece of my skin and call it a day'.  (An insurance thing perhaps?)

    This doctor is the same man who diagnosed me over 6 years ago.  And he was thorough and kept running tests, even after some came up negative, until we got to the reason why I had bloody discharge. 

    I also had a couple complex cysts a couple years back and he thought it was best to remove them and biopsy them just to be sure (benign).

    I've been reading a few stories and have noticed that more than a few women have had a very difficult time getting IBC diagnosed, especially if you didn't present with the noticable inflammation  and redness.  So I guess I shouldn't be surprised.

    I don't think it is IBC, but it'd be more than a little comforting to rule both that out and Paget's in one little test.

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  • SandyInNj
    SandyInNj Member Posts: 48
    edited February 2009

    I figured it was something that could be done in the office.  So I'm wondering 'what is the big deal, just get a piece of my skin and call it a day'.  (An insurance thing perhaps?)

    This doctor is the same man who diagnosed me over 6 years ago.  And he was thorough and kept running tests, even after some came up negative, until we got to the reason why I had bloody discharge. 

    I also had a couple complex cysts a couple years back and he thought it was best to remove them and biopsy them just to be sure (benign).

    I've been reading a few stories and have noticed that more than a few women have had a very difficult time getting IBC diagnosed, especially if you didn't present with the noticable inflammation  and redness.  So I guess I shouldn't be surprised.

    I don't think it is IBC, but it'd be more than a little comforting to rule both that out and Paget's in one little test.

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    If you remember "ibcspouse" who has been a faithful poster here in the IBC threads, he needs you guys right now.

    Cam, his wife, had been NED since November.  Last week in a matter of hours, she developed mets to the skin!!!!!  They are leaving for Houston today to try and get accepted into a clinical trial at MD Anderson.  I dont know which trial, but evidently there is one that could offer her some hope.

    In case you are unaware, ibcspouse was unfairly banned for life from this message forum!  Those of you who know him, know that he could never do anything to deserve that!  BUT, you can find him here:  http://www.breastcanswers.com/bcforum/index.php and his new ID is "camsdh".

    If you guys could take a minute to visit the new forum, perhaps register and post to him in the IBC Forum, I know it would help him get through this very scary time.

    On ibcspouse's behalf, I thank you!

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