Opinions please!! IBC?? (Pic)

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Nonexistent
Nonexistent Member Posts: 18
edited March 2017 in IBC (Inflammatory Breast Cancer)

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Hi all,

I have had a rash continually getting worse on my right breast, it started out looking like a hickey or bug bite and is EXTREMELY itchy all the time. Began the week of April 18th and has spread considerably since then. I have also started to notice a difference in the feel of the nipple on the affected side, it feels soft and flaccid around the base where the nipple starts into the areola. Not seeing a major difference in size of the overall breast. Peau d'orange is visible slightly when laying down and looking with a hand mirror. I couldn't get an appointment with my GP until next Wednesday (June 4th) so I am just wondering if anyone can tell me if it bears any resemblance to their initial symptoms? Also if anyone thinks it would be better just to go into the emergency department at the hospital as opposed to waiting another 6 days to see GP? 

P.S - I did 7 days of diaper rash cream in the very beginning thinking it was maybe heat rash, when that didn't help (still got worse) I switched to an OTC hydrocortisone cream for another 10 days also with no improvement (kept spreading, itching uncontrollably) 

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  • april485
    april485 Member Posts: 3,257
    edited May 2014

    I don't know any specifics about IBC, but just googling some photos, I would definitely get to a doctor sooner rather than later. Looks like some of the photos on there, but it could also be some type of rash. When in doubt, get it checked out is my motto, particularly this since it is so virulent sometimes. Wishing you the best of luck and hoping it is not BC!

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  • Kicks
    Kicks Member Posts: 4,131
    edited May 2014

    See a Dr ASAP!  Whatever it is needs to be treated/DXd sooner rather than later.  (Did you mean to say your appt is June 4 - instead of May 4?)

    No one here is qualified to tell you what is going on as we are not medical staff actually seeing you.  IBC is quite rare (only between1% and 5% of all DXd BCs).  IF everyone who decided they were IBC because they had a rash on there breast were right - it would be the most common form.  There are so MANY possibilities as to what your rash is, but anything is possible.

     Your pictures do not look anything like my IBC presented itself but 'it' does not always present the same way with all of us.

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  • Nonexistent
    Nonexistent Member Posts: 18
    edited March 2017

    thank you both so much for responding! Yes I meant June 4th sorry about that. I have decided I can not take a 6 day wait, my mom is on her way to pick up my kids and I am heading to the ER in town hoping they will be able to do an ultrasound at least (I live in Canada) will update as soon as I have anything to add.

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  • Kicks
    Kicks Member Posts: 4,131
    edited May 2014

    I hate to tell you this but IF IBC is present - it quite possible will not show on a Mammo or US.  Biopsies are needed to confirm.  Also, many Drs have no clue about IBC at all.  

    Again - there are MANY possibilities that are much more likely.  As long as the area has been there, yoi need tp find out what it is and get treatment anyway.

    Let us know what you find out.

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  • Nonexistent
    Nonexistent Member Posts: 18
    edited March 2017

    just home from emergency now, the doctor actually didn't look at me like I was crazy when I said IBC, he has booked an ultrasound for this coming Tuesday to start with. He did give me an anti fungal cream to try in the meantime so I'm hoping it will work and all my worry will have been over nothing but just the way the doctor thoroughly checked the entire breast and agreed with me that there is some peau d'orange and changes happening in the nipple have me a bit freaked out. If anyone seeing this has had a similar appearance on their breast please let me know what it ended up being! 

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  • Nonexistent
    Nonexistent Member Posts: 18
    edited March 2017

    OK, I'm either going crazy or since putting the anti fungal cream on it about an hour ago the peau d'orange has become more pronounced...could this mean it is working?

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  • Kicks
    Kicks Member Posts: 4,131
    edited May 2014

    I'm glad to hear you got a Dr who at least has some knowledge and has you started down the road to getting answers.

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  • Nonexistent
    Nonexistent Member Posts: 18
    edited March 2017

    image

    I have now used the anti fungal cream 4x and to me this looks worse than yesterday, the pitting and ridges going out toward the nipple are very obvious today (those ridges are not present on the healthy breast, not stretch marks etc.) and the redness outside the initial circle is becoming darker/almost turning purple. Should I go back to ER today and ask for emergency ultrasound and then biopsy or just wait until Tuesday? Freaking out here! :( 

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  • amarantha
    amarantha Member Posts: 457
    edited May 2014

    Carly, don't freak out.  Unless it's terribly painful, you can wait until Tuesday.  Tuesday is very soon. Just hang tight.

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  • wrenn
    wrenn Member Posts: 2,707
    edited May 2014

    you could call 811 to ask an RN or call a pharmacist to ask whether the anti fungal will do harm (in case it is a bacterial infection) but even if it was IBC nothing will happen in a few days.  Try to say to yourself " i am ok right now".  That is the trick i use to settle down.

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  • Kicks
    Kicks Member Posts: 4,131
    edited May 2014

    Personally, I would not go to ER again - unless something else majorly developes.  I would use the cream as told to and go to the Tues appt.  You've waited 5 - 6 weeks to seek answers already, so waiting til Tue. is not long at all.  Even IF you do get an 'emergency'  US, and IF shows a need for a biopsy, you will not get an immediate DX or start TX on a Sat. afternoon.

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2014


    Carly, So sorry that you are in this situation and have such worry. Just as a reminder we are not doctors here nor can we diagnose or advise you based on your reported symptoms or pictures. Wrenn makes a good suggestion that you may want to contact the pharmacy at least and learn about the anti fungal cream and its possible side effects. Keep us posted. The Mods

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  • Alive4Five
    Alive4Five Member Posts: 2,394
    edited May 2014

    Carly, hi! Again, I am not qualified to give medical advice or diagnosis. Hang in there till Tues. and do as the Dr has ordered!

    Meanwhile, I just want to add my two-cents. I had a similar (very similar) rash with the worst ongoing itching you describe...and I just want to say my hygiene had Nothing to do with it. BUT it turned out to be mites....yes, mites. (I know, disgusting...)

    I was told it could have been transferred by trying on bras or clothing. I am a 'bargain' hunter shopper, and go to second-hand stores. And though they claim the clothes have been washed, it is absolutely necessary to wash before wearing. This can also happen with brand new clothing at any retailer. Also scoured everything I own, lol..I mean Everything.

    The creams you mentioned didn't work for me either. They stung and burned and I continued to itch. Never-the-less, mites is what it was. But only a Dr doing a swab test under micro, can better say. I hope that is not what it is, but at least it would be better to know it is something of that nature, rather than IBC.  

    Please do keep us posted! ((hugs))

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  • Spooky1061
    Spooky1061 Member Posts: 33
    edited June 2014

    I would say if its itching that bad, two things, don't stress it makes things worse. Just calm down and tell your self its gonna b ok. Do u have an aloe Vera plant. If so, try opening one one leaves and see if the gel inside there will help. If not, try some calamine lotion. Listen to some calming music tonight. U will do just fine. Going to ER is going to make it worse because of the stress. U will make it, you're strong. I believe it. If that doesn't work, try freezing it with some ice. Let me know what happens I'm really interested now..

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  • Spooky1061
    Spooky1061 Member Posts: 33
    edited June 2014

    Go to ibc research .org Auto correct kept changing. It says it could turn purple and it does start out as a big bite. Maybe maybe not. It says to give the cream10-14 days to work. If not, then go see a breast surgeon / specialist. Go onto the forum where others ladies have had IBC before and talk to them. It can't hurt.

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  • Nonexistent
    Nonexistent Member Posts: 18
    edited June 2014

    no change in appearance today but I am now having a constant muscle ache type pain in what I would assume is the chest wall near the top of the breast and down the far right side (closer to armpit) and every now and then a sort of pinching type pain around the 11:00 position just above nipple. Tuesday can't come soon enough!! Thank you so much to everyone who has replied with advice and good wishes, it means a lot to me, I will continue to update even if it turns out to be something non cancerous. 

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  • Akevia
    Akevia Member Posts: 209
    edited June 2014

    Carly my peau d'orange appearance started out on my nipple first also. I hope IBC isn't the case, good luck on Tuesday. Like everyone else said try to relax and we know it's easier said then done because we have all been there.

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Hi Carley, I have nothing to add that hasnt been added but please know I'm thinking of you! I hope you find relief and good luck on Tuesday! 

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  • Nonexistent
    Nonexistent Member Posts: 18
    edited June 2014

    Just got a call from the hospital imaging department that I was put at the top of the cancellation list and there may be a spot available this afternoon, will know soon. Hoping to get this done today and start getting some answers. Hope everyone has a great day and thanks again so much for being so supportive! 

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  • april485
    april485 Member Posts: 3,257
    edited June 2014

    Keeping you in my thoughts!

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  • spendygirl
    spendygirl Member Posts: 231
    edited June 2014

    Hoping you get to go today.  The waiting is so all-consuming.  I really do hope it's a benign condition that's easily treated :). I'll be watching for your update!

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Good luck!!

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  • Nonexistent
    Nonexistent Member Posts: 18
    edited June 2014

    Had the ultrasound about an hour ago, technician initially said she was done but then came back for more images after speaking with the doctor (kinda freaked me out) they said my GP would have the results within 3 days so now to hurry up and wait...

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  • Kicks
    Kicks Member Posts: 4,131
    edited June 2014

    To me (based on my personal experience) - that sounds quite positive to not have wanted to do a biopsy then.

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  • Morwenna
    Morwenna Member Posts: 1,063
    edited June 2014

    In my experience, twice now, the tech goes running off and fetches the doctor, them the doctor tries the ultrasound and decides to do a biopsy. 

    I'd say you have cause to be hopeful. Fingers crossed for you!.

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  • Nonexistent
    Nonexistent Member Posts: 18
    edited June 2014

    Hi Bon,

    The cream is called Terbinafine HCI 1% and I am to use it 2x daily, in the beginning I had some raised areas of rash that were starting to peel or flake and the cream has helped with that but done nothing for the actual peau d'orange appearance or the darkening of the skin or the itchiness, this makes me worry that I may have had a secondary infection on the surface just from how much I was scratching at it. I am also now noticing that the areola on the affected side is getting larger and darker than the one on the unaffected side. I don't know what to think at this point, just praying that I'm being silly and it's nothing!

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Can't add to this except to say keeping my fingers crossed for you and sending good energy to you.

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  • april485
    april485 Member Posts: 3,257
    edited June 2014

    Hi Carly, any word yet? Did you get in for your tests? Thinking of you!

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  • Nonexistent
    Nonexistent Member Posts: 18
    edited June 2014

    Hi again!

    As far as I know my doctor should have the results by today or tomorrow, the MOA at the office said if the doctor sees something serious in the US they would call me right away otherwise I have a scheduled appointment for Friday (we changed from the original appt because there was no point going in until they had seen the US). I called the pharmacy like you suggested Bonnie, no answer so I left a message hoping to hear back this morning. Now I know you guys have all said there is a good chance that nothing will show up on US imaging, my doctor (love her, really...but....) she tends to take a wait and see approach to everything and get a little standoffish when contradicted, any suggestions on how to proceed with a doctor like that if nothing does show on US? 

    I so appreciate all the advice and support I have found on this page! You guys have made this waiting so much easier! Thank you, thank you, thank you!

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  • april485
    april485 Member Posts: 3,257
    edited June 2014

    Hi Carly...sorry you are still in limbo on this. If it were me, I would just tell the doctor that with IBC, you have lots of information that it does not always show up on an US and would really feel more comfortable if they would biopsy it because the nature of IBC is so serious and fast-growing. 

    Plead with her if need be, telling her you are a wreck and will be until you get some definitive answers regarding this rash. If you have to, show her some photos of IBC from websites! Honestly,  I would do that if I had to. Not knowing is truly very hard on us/you. Maybe she will take a compassionate stance and order a punch biopsy at the very least, or even better a core needle biopsy.

    Keeping fingers crossed that this is truly not anything other than a rash! You still have hope of that for sure and we will all be celebrating with you when you find out or if it is something, we will be here for you as well. Although I did not have IBC, I do know what it feels like to be afraid and wait for results as that is universal on BCO I suspect. HUGS!

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