Concerned about IBC, please advise

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gotallier589
gotallier589 Member Posts: 19

I have severe burning, itchiness, and pain in both of my breasts, but especially my left one (which is where it first started).  About 6 months ago, I developed a small red patch on my left breast that changed to a purplish, bruise-like color that rapidly expanded to my entire breast and along my left side.  My left nipple then began to change: it flattened, the areola became darker, wrinklier, and the nipple retracted.  The nipple does come out, but when it does, it looks very wrinkly, red, and crusted.  It burns whenever it pops out and sometimes the tip of the nipple looks blood red.  The rash then spread to my right breast and my right nipple then proceeded to flatten and retract like my left nipple.  The burning and itchiness used to be intermittent, but is now persistent.  I have tried many creams and ointments prescribed by dermatologists for the rash, but nothing works. I've also tried homeopathic, natural remedies for eczema (shea butter, jojoba oil, olive oil, vaseline, etc.).  I take minocycline 200mg every day long-term so it can't be an infection (and none of the doctors seemed to think it was).  I had an ultrasound that showed nothing (it was done in february), but the technician said she felt lumpiness and thickening of my breast tissue (which could be normal fibrocystic breast-but it didn't feel this way before).  The first breast specialist I saw completely blew me off.  I've seen more than one dermatologist who didn't know what it was or why none of the things I have tried worked.  A dermatologist did a punch biopsy of the rash on my side (not on my breast) and it came back as most likely being eczema.  I saw a second breast specialist who said she was completely stumped by my symptoms.  She noted swelling along my chest, rib, and in my left breast.  She said it wasn't IBC, but did a punch biopsy because I insisted.  Every day the burning becomes more intense and now it feels like my lymph nodes are swollen on both sides and the pain is very intense.  I had the biopsy on tuesday (may 8th--my 23rd birthday) so the results won't come back til next week.  I'm just very worried and uncomfortable.  What if the biopsy comes back negative and I still have it?  I have small fiber neuropathy and other health complications so doctors tend to think every problem I have is related to that, even when it's not.  This feels different and not many people take me seriously because of my age.  I would greatly appreciate any suggestions!!! (sorry for the long story)

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2012

    Hi Gotallier,

    While you wait for the ever-helpful advice from the other members here, we suggest you consider checking out the main Breastcancer.org site and the Getting a Second Opinion section. In addition, you can read about IBC and the signs and symptoms it presents.

    Please keep us posted with any updates, Hope this helps!

    --The Mods

  • gotallier589
    gotallier589 Member Posts: 19
    edited May 2012

    I apologize if I sound like I'm complaining or if I posted this in the wrong section.  I am grateful to anyone who has taken the time to read this.  I know that you aren't doctors and cannot diagnose me, but I just wanted to know if anyone's experience was similar.  I understand if you are unable to respond to me and I hope that everything turns out well for everyone.  

  • Claudia413
    Claudia413 Member Posts: 114
    edited May 2012

    I'm a 4-yr survivor of IBC and Vice President of the Inflammatory Breast Cancer Foundation (see www.eraseibc.com). The signs and symptoms you described are classic IBC symptoms. I will never understand why a doctor can't do research like we do when we have symptoms. I would suggest that you contact one of the IBC clinics around the US where you can see a doctor who is familiar with IBC and will do a correct biopsy/biopsies to get you the proper diagnosis.  With IBC we say "when in doubt, rule it out", meaning if you think you might have IBC, get the biopsy that will rule it in or out because it's highly aggressive and deadly if not diagnosed promptly.  Dr. Beth Overmoyer from Dana Farber in Boston will be on our radio show next Wednesday night at 9 pm ET talking about the importance of prompt diagnosis of IBC. You can see the info on the show and where to listen to it on our website. 

  • julz4
    julz4 Member Posts: 2,490
    edited May 2012

    Gotallier....I passed by this thread last night. I read it & couldn't stop thinking about you. I had a thought...I see your from MD? I'm wondering how far you are away from John Hopkins! A really good Breast Center from word of mouth of friends. Also my BS trained there although many years ago. Just a thought that you might find someone to listen there. Good place for a second opinion. It might be worth a try. Keep us posted. I may call a few friends that go there just for BC. Try & come up with a few names for you.

  • gotallier589
    gotallier589 Member Posts: 19
    edited May 2012
    Thank you for your responses!! Claudia413, I will definitely listen to the radio show and will try to find an IBC clinic near me.  I can feel and see that something is very wrong and need to feel confident that I am getting definitive answers.  Julz4, I live about 35 minutes from Johns Hopkins.  That would be so great if you wouldn't mind telling me the names of some doctors there that have been helpful for your friends.  I will certainly try to get an appointment there as soon as possible.  Thank you for the wonderful suggestions and for being so kind!!! Smile
  • julz4
    julz4 Member Posts: 2,490
    edited May 2012

    Gotallier.....The Dr. at John Hopkins is Dr. Julie Robin Lange. MD 443-287-2778.  There is a satalite station for getting mammo's & testing outside of the city called Green Spring Station. That's in Lurtherville, MD.  I hope this helps.  I here she is excellent, I know of several women that go to her from my town in PA.  I hope this helps & please let us know how things go.

  • gotallier589
    gotallier589 Member Posts: 19
    edited May 2012

    Thank you very much! I will definitely give her a try and will keep you posted. 

  • kleo1234
    kleo1234 Member Posts: 2
    edited May 2012

    Hi everyone.....I'm new on here and i am looking for some advice.  I went to my Doctor yesterday as I have been suffering from Painful breasts and itchy nipples in both breasts for the last couple of weeks. My doctor checked me thoroughly and has reffered me to a speciallist as he i concerned that i have unusual lumpyness and i have to have a mammogram.  I am 30 years old with 4 young children and I know i haven't been diagnosed with anything yet but I am really worried.  Has anyone had a simmilar experience.....Any advice would be great.  Thankyou and  I hope you all the best x

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