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IBC Fear- swelling and now redness

scaredmomoflittles Member Posts: 3
edited January 2023 in Not Diagnosed But Worried

Hi there, thank you so much to anyone reading this that can offer support. I’m a mom of two young kids and absolutely terrified I have IBC.

After I finished breastfeeding my littlest, and everything went back to normal, my one breast remained larger with some inflammation under my arm and random pains. That was 12 months ago.

4 months ago I had a diagnostic mammogram and US and everything was clear. They checked the lymph nodes in my armpit and chalked it up to extra breast tissue. The pain remained but comes and goes. Doctor believed the pain was muskoskeletal.

The breast gets larger with my period but goes back to its “new normal” after my period. It hasn’t gotten and larger overall and it’s still soft.

The week before Christmas (so 2 weeks ago) I started noticing some redness in the top part of my breast, with some itching across my chest near my collarbone. My husband called the redness “pink” and it’s not angry like mastitis, but faint.

Saw my doctor yesterday who takes me very seriously, and told me that she isnt concerned by the rash, that it has been two weeks and is still faint, it would have progressed more, and the swelling has been for the better part of the year. That IBC moves faster that than. I asked about a biopsy and she told me the breast clinic wouldn’t even accept me for this rash because it’s so faint. She gave me a cream and I have a follow up in a month.

Regardless, I am freaking out. I can’t stop analyzing the rash for changes. I am stuck on “how fast “ this aggressive form progresses because I only ever see “weeks or months” and nothing specific. Could it have caused the inflammation and then nothing until a few weeks ago?

Also, I’m so worried that we will miss an early diagnosis if I have it. Would it start out like a light rash? Or would it be angry right away? I’m having so much trouble finding info on early stages so I don’t know if I should be pushing harder or accepting that it’s not likely the cause?

Thank you for reading my ramblings.

Any reassurance or thoughts would be so appreciated


  • moderators
    moderators Posts: 8,089

    Hi scaredmomoflittles, and welcome.

    We're so very sorry to hear of your concerns, but we hope you find some help here.

    To help get some more information that may calm your nerves, please read here:

    We know it can be easier said than done to try not to worry, but your age, along with the fact that IBC is rare, makes it very likely that what you're experiencing is nothing at all to worry about. Have you tried the creams yet for the breast? You may be dealing with nothing more than a small bout of dry skin or eczema. See some more info here on Benign Breast Conditions.

    We hope this helps and that you see results with the lotion soon. Please keep us posted.

    --The Mods

  • scaredmomoflittles

    Thank you so much for your reply. I read through all the info you shared, and appreciate it. It has been a half a week now and I don’t know how I’m going to stay “calm” for 3 more week.

    I’ve been using the cream - it’s a antifungal/antibacterial. It seems less red according to my husband, but the swelling is there and it’s sore. The nipple is also more red, but maybe that’s from the cream. It’s definitely not dry skin, I wish it was.

    It’s hard to convince myself it’s ok with all of the above going on, I don’t know what to think. I’m 35, so not super young.

    I guess I have a have a few Questions…

    The timeline part would be big for me. I’m now on 3 weeks from noticing the rash, would it be more prominent by now if IBC?

    Would the rash fade away? I’ve seen it can come and go so that’s stressful to read and crushes my optimism.

    should I be relieved they don’t think I need a biopsy? Or am I wasting time?

    Thank you for your time, I’m just so scared. I can’t shut off my mind

  • lw422
    lw422 Member Posts: 1,403

    ScaredMom--it's difficult to say about the presentation of IBC because we are all different. For me, it was a relatively small (about the size of a quarter) pink "bruise" on the top of my breast. No pain, no swelling, no "orange peel" skin. I thought I had hit myself somehow, but after a week and no color change (like a bruise will change from red/blue/yellow while fading), I got freaked out and started googling. After a panic I was able to see my PCP right away, and she sent orders for a mammogram and and ultrasound, which I had done at MD Anderson in Houston. I was diagnosed before I left MDA that same afternoon.

    IBC is a clinical diagnosis, based on a combination of symptoms. It does not "come and go," but usually progresses and at a rapid rate. As for a skin biopsy, a dermatologist can perform that. I'll add that I had two skin punch biopsies and neither found any sign of malignancy, and I did have IBC. But if it would make you feel better, make an appointment with a dermatologist.

    When you say "They checked the lymph nodes in my armpit and chalked it up to extra breast tissue.", does that mean you have swollen nodes? I assume that your doctor has ruled out mastitis? An infection can cause swollen nodes. Have you noticed any thickening of the skin on your breast, or inversion of your nipple?

    I know you are terrified and I don't blame you, but your doctor is correct in that IBC does move fast. That said, we are our own best advocates when it comes to knowing that "something" is wrong. Push for additional testing if you feel it's necessary. My very best to you in this upsetting time. You probably know that IBC is very rare so the chances are excellent that you don't have it. Take care of yourself.

  • scaredmomoflittles

    @lw422- thank you for your reply and support. I thought it couldn’t be picked up on a mammogram/us? What did they see? Part of my confusion and fear with all this is I don’t understand which test will actually make me assured that it’s nothing or something.

    My diagnostic US/mammo didn’t really show much and my score was only a 1. I had some extra tissue in the one quadrant on the first scan but when exploring further they found nothing of concern and it says nothing further required. Lymph nodes were fine. The extra tissue comment was in relation to my breast itself. After I had kids the one seemed to stay larger while the other deflated (as they do, hah). My nipple is fine. It’s the size change (8 months) discomfort (ongoing past 4-6 months) , redness (3 weeks) that is my concern. The rash seems a bit better maybe aside for some broken blood vessels, but the rest is still of concern and it’s uncomfortable.
    So I don’t know what to think.

    I wish I could go to a derm on my own but I’m in Canada and have to wait to go through my doc for the referral. she said my next step would be the breast surgeon. I just have to wait for my appointment at this point to push for the referral, which is going to be a long 2 weeks.

    Thank you again for your support.

  • lw422
    lw422 Member Posts: 1,403

    ScaredMom--you are correct, most times IBC is not diagnosed by mammogram (68% Dx rate) but much more often by ultrasound or MRI combined with mammogram (98 to 100% Dx rate), which show skin thickening and other anomalies. Often there is a "scattered pattern" of small lesions in the breast and many times a small IDC tumor as well.

    Since you have had a mammogram and ultrasound, I tend to believe that you don't have IBC because those are the most common testing methods with the best rates of diagnosis. I know that you are frightened and worried about the symptoms, but there are many types of mastitis or some types of allergic reaction that have similar symptoms.

    Just be on the alert for any worsening or spreading of the rash, particularly if the skin thickens and takes on an "orange peel" appearance, if your nipple inverts, or if the swelling worsens. Those are common IBC hallmarks, though everyone is different with how it presents. As I said previously, my breast didn't look any different to me, except for the pink "bruise." The ultrasound showed skin thickening that was not apparent to the naked eye, and my nipple was extremely sensitive. I had to wear a bra 24 hrs a day because anything touching my nipple actually hurt.

    A skin biopsy (or just a visit to a dermatologist) might discover the reason for your rash, so if it would give you peace of mind then push for it. If you can see a breast specialist then definitely do that if only to calm your fears. Try not to worry (though I know how ridiculous that expression is). I hope they can figure out what's causing your issues and get you back to normal! Take care.