Can I ask for advice on my next step?

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JJMAMA
JJMAMA Member Posts: 81

Hi all -- I have posted up above regarding my issue with trying to figure out my left breast problem, and I seem to have hit a wall.  I'm breastfeeding my 3-month-old little boy.  About 6 weeks ago I experienced extreme nipple soreness.  Two weeks after that I started having stinging pain in my nipple, going up into my breast and finally into my armpit.  My left breast is swollen as well as my armpit, although I've had a few physical exams with nothing of concern found in the armpit.  I was diagnosed over the phone with mastitis, took antibiotics but got no better.  I went to the ER concerned about IBC, given a different antibiotic -- did not get better.  Returned back to my OB/GYN who scheduled me for a diagnostic mammo and ultrasound -- both normal.  No skin thickening detected.  I had a friend of mine who knew an oncological breast surgeon -- she did an exam but did not do a biopsy because she said that she could not find any abnormality to biopsy.  SHe did another ultrasound but once again, it was normal.  I DO have enlarged hair follicles, but I have those on both breasts, and they don't really look as severe as the pictures I see of the peau d'orange.  Her diagnosis was it was a breastfeeding issue.  I went to two lactation consultants.  I was found to have a bleb, but it is not felt that would cause my breast to swell or the entire breast to hurt.  Nothing clear as to what "issue" this is and I've breast fed before, so I know what feels normal for it.  So what would you do?  I feel like SOMETHING is wrong, obviously because of the pain and swelling.  Do I trust the ultrasounds and mammo?  Do I try to get an MRI?  Do most surgeons have to have a specific abnormality for them to perform a biopsy?  I feel like I can't relax -- I want to know if it's cancer or not, so that I can figure out a plan either way.  If it is I need to diagnose is quickly, if it isn't I need to really focus on whatever else is causing the pain.  I'm interested in hearing from people with IBC so that I can understand how you were diagnosed.

Comments

  • JJMAMA
    JJMAMA Member Posts: 81
    edited April 2015


    And I DO understand the rarity of IBC, and that many, many people post thinking they have it when they don't.  But I also know that people do get it ...

  • Windermeremom
    Windermeremom Member Posts: 16
    edited April 2015

    I can tell you that when I was recently diagnosed with IBC, the mass was clearly visible on both the diagnostic mamo (3D) and the ultrasound. The thickening of skin was also shown even though I had only had symptoms for 2 weeks. My biopsy was able to be done on the same day by the diagnostic radiologist, so surgeon was not needed at that point. I was at a women's center for radiology that seems to specialize in breast center.

  • JJMAMA
    JJMAMA Member Posts: 81
    edited April 2015

    Bless your heart, thank you so much for responding.  That makes me feel a little better -- I'm still going through with the MRI, because something is wrong, but it seems like everything is taking SO LONG.  Hope you are doing well and I'm glad you were able to get such a quick diagnosis.

  • Meadow
    Meadow Member Posts: 2,007
    edited April 2015

    JJmama I hope you find out soon what is going on, I know it is a worry

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