Scared! Do I have IBC?

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christinacollins
christinacollins Member Posts: 7

I recently noticed a lump in my right breast. In 2 weeks it has doubled in size and my breast feels swollen. I had a mammogram and ultrasound and they couldn't figure out what it was. They put me on some antibiotics thinking it could be infection but that has made no difference. I took them the full 10 days. They said the lump was only 3 cm but my breast is now an entire cup size bigger it seems and is very tender. I will have redness that comes and goes and now it is starting to do the orange peel look, pitted on the side. It has been over a month since I first noticed the lump. My appointment for a breast specialist isn't until March. The pain is getting worse. I'm extremely worried.Breast cancer runs in my family. Please help. Does it sound like my symptoms are IBC?

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2015

    Hi Christina-

    First, we want to welcome you to our community here at BCO. We're sorry for the worry that brings you here, but we're glad you've found us.

    If you're worried and are noticing even more changes, and can't get an earlier appointment with the breast specialist, you can try getting in to see your personal physician. Have you spoken to your doctor, the one who ordered the mammo and ultrasound? If not, or you haven't seen him or her for a follow-up after completing the antibiotic, you should call and talk to them about the continued issues. IBC is incredibly rare, making up only about 1-5% of breast cancers, but we know it's hard not to worry. Just remember, the odds are on your side!

    Please keep us posted, we'll be thinking of you!

    The Mods

  • ibcmets
    ibcmets Member Posts: 4,286
    edited February 2015

    Christina,

    I would see if I could get an earlier appt. as well. I personally had to wait about a month b/4 I got my first appt. but right after all my appts were made quickly by doctor referrals.

    Terri

  • isisscarfe
    isisscarfe Member Posts: 1
    edited February 2015

    You are your best advocate. PUSH politely for an earlier appointment!

    Now, My question...I had a pink scald like looking mark the size of a quarter turn to a deep purple on my L breast and it lasted deep purple for 8 weeks. Over these 8 weeks, I saw a doc who ordered an US, and mammogram which were both negative.  He referred me out to a surgeon for a look, but by the time I saw a surgeon the mark resolved 5 days earlier! :(  Anyways, we agreed on a 3 mos follow up US, which showed a 'concerning mass'.  Biopsy revealed this to be an 8mm PASH...'slightly insignificant'..."you take it out and carry on'...except that I went for the mammotome yesterday and that 8mm PASH is now 1.6cm and lobular!?... and thus no longer candidate for mammotome.  I will be having it surgically removed BUT the radiologist said something that I had already thought!....."sometimes these PASH tumors are associated with cancers we don't even know we have".  Obviously I am concerned that my 8 week long pink to purple mark is the earliest of earliest signs of IBC - bc we all know, once IBC is clinically diagnosable, it is usually stage 3 or 4!  Who KNOWS what it looks like, or acts like in stage 1 or 2....there is no data that I can find.  Call me crazy but an 'insignificant PASH' tumor bening or not COMBINED with an unanswered discolouration mark of 8 week duration brings a new level of concern...right? 

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2015

    I wouldn't think so. PASH is pretty common. IBC isn't.

  • Sgirl
    Sgirl Member Posts: 26
    edited February 2015


    I have read where PASH tumors are not all that uncommon.  However, I am not sure if that would cause a purple/pink mark to be on your breast.  Have you considered another opinion with a different breast specialist?

  • Kicks
    Kicks Member Posts: 4,131
    edited February 2015

    IBC is diagnosed via biopsies - not just 'look'. It is rare - only between 1% - 5% of all DXd BCs. IBC is aggressive and rapid - often presents overnight. Does not 'come and go'.

  • christinacollins
    christinacollins Member Posts: 7
    edited February 2015

    I got an appointment with a surgeon the other day. He said the mass is unusual and very large in size and thinks I should just get it removed. I have surgery on Tuesday. He said when he starts the surgery if the mass looks cancerous he will take a chunk out and have that tested for cancer. I'm worried about the size of the mass and what my breast will look like after he removes it. Of course if I end up having cancer that will be the last thing on my mind. As of right now the lump has gotten bigger and is starting to make my nipple look odd. I can feel it under my nipple now and it was not there before. My breast is hot to the touch. I am so nervous. I'm only 27 years old and I have 2 kids. This scares the crap out of me. I will definitely let you know what happens on tuesday. Thank you everyone for your replies!

  • christinacollins
    christinacollins Member Posts: 7
    edited February 2015

    I also have microcalcifications in both breasts. I'm not quite sure what that means. I read that it is a warning sign of cancer to come. Did any of you have microcalcifications?

  • Moderators
    Moderators Member Posts: 25,912
    edited February 2015

    Hi Christina,

    There's some brief information on our main site on Microcalifications.

    http://www.breastcancer.org/symptoms/testing/types/mammograms/mamm_show

    Gentle hugs to you,

    The mods


  • Kicks
    Kicks Member Posts: 4,131
    edited February 2015

    It would seem that a biopsy would have been in order first. TX plans are different for different types of BC IF the mass is some type or benign as 80% of all biopsies are. From what I've been told every tumor that is removed should be sent to pathology to know for sure what it is - the 'look' of it is not reliable.

    You mentioned hot feeling - it can be a sign/symptom with IBC but not with all IBCers. It can also be a sign/symptom of other issues.

    Neoadjuvant Chemo (pre-surgery) is the SOP not just because of skin involvement but also do get it to form into a 'lump' with margins so the surgeon can have a chance of 'getting it. It normally forms as a 'nest' or 'bands' with no distinct margins.

  • ibcmets
    ibcmets Member Posts: 4,286
    edited February 2015

    Christiana,

    Kicks & Bon are correct re: chemo first for those diagnosed with ibc. IBC has a standard protocal of treatment unlike many other breast cancers.

    Terri

  • Missy328
    Missy328 Member Posts: 31
    edited February 2015

    Christina, the surgeon should be doing a punch biopsy where they just take two small samples of skin. Surgery should never be done first with IBC. I would get a second opinion .personally. Even a dermatologist will do a punch biopsy sometimes. Does this surgeon have experience treating IBC

  • Kicks
    Kicks Member Posts: 4,131
    edited February 2015

    Missy328 - A punch biopsy may be done for some - but not always something that is appropriate for an IBC DX. For me, there was no skin issues to biopsy but FNB did work for my IBC DX

    Yes - Dermatologist (and others) can do punch biopsies. My Dermotologist has done punch biopsies for my BÇC and SCC (which have nothing at all to do IBC). But we are all unique and there is no 'One Size Fits All'.

  • Missy328
    Missy328 Member Posts: 31
    edited February 2015

    yes Kicks we are all unique! I only mentioned punch bx to Christina because she has intermittent redness as well as the

  • Missy328
    Missy328 Member Posts: 31
    edited February 2015

    Yes Kicks we are all unique : ). I only mentioned punch bx since Christina has intermittent redness as well as the peau d'orange. My IBC was not found with FNB. The cancer was, just not the IBC specifically. I feel they should have done the punch bx first because so much time was taken doing everything else and as we know time is crucial with IBC

  • christinacollins
    christinacollins Member Posts: 7
    edited February 2015

    Hey. Sorry to have taken so long to reply. Thank you all very much for your feedback. I cancelled the surgery and the soonest I can get in to see a breast specialist is March 3rd. My breast keeps changing and the size seems to be slightly bigger than last time I was on here. Today it has been very sore and very red with those odd orange peel looking spots. It's odd because the redness and orange peel stuff comes and goes but the mass never seems smaller and my nipple is kind of sucking in. I noticed 2 really hard spots close to my nipple that were not there before also. But anyways I will keep all of you posted and thnks again. Oh and one more question, how long did it take to get a diagnosis from the time you noticed symptoms to the actual diagnosis? I've had these symptoms going on 2 months I'd guess.

  • Missy328
    Missy328 Member Posts: 31
    edited February 2015

    I had my symptoms about two months also. Btw, my rash faded for a while and then came back. I think it's great that you cancelled the surgery. I wish you the best of luck. Keep us posted please. I will pray for you

  • christinacollins
    christinacollins Member Posts: 7
    edited February 2015

    Thank you! The redness and orange peel look has been there for 2 whole days this time...that's the longest I've had it stay there so far. And it has been very painful those 2 days. Thanks for your support! I'll definitely keep you posted!

  • christinacollins
    christinacollins Member Posts: 7
    edited March 2015

    Went to the breast specialist. They said it looks like infection. They took some fluid out of one of the spots they found for testing. I'll be on antibiotics again for 14 days. If there isn't a significant change then I'll be getting a biopsy done.

  • christinacollins
    christinacollins Member Posts: 7
    edited March 2015

    Just got the call today. The fluid they tested showed that it's not infection. I have to have a biopsy next week.

  • ibcmets
    ibcmets Member Posts: 4,286
    edited March 2015

    Christina,

    Glad you are on top of this and I hope they find out next week what's going on.

    Terri

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