Bilateral inflammatory breast cancer?? Please read and help 🥺

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Sisel2
Sisel2 Member Posts: 3
edited February 2021 in Not Diagnosed But Worried

Hi all,

First, I want to say thank you all for joining this forum and allowing us anxious, worried folk to ask you diagnostic question! You are all truly amazing for coming on bro help others considering you yourself are already going through it! ❤️

I am now about 4 months postpartum with twins and TERRIFIED that I might not be around for their lives. Symptoms started just over 2.5 months ago.


Redness of the entire breast, especially bad on the outer sides and bottom, tenderness along the bottom of the breast near the chest wall, inflammation and skin thickening (seen on ultrasound), swelling, slightly pitted skin (can see the white dumplings among the red/darker area), randomized shooting pains especially on the sides of my breasts, itching that feels internal, and my nipples are just ever so slightly puckering into my areola on the top, not fully inverted or retracted at this point.

When my symptoms started, they were bright red and now resemble a dark purple, almost bruised appearance that is worse on the sides, the bottom has taken on this darker tannish color with more redness outlining my breasts along the base near my rib cage, and the top is a very light red, almost looks like my skin.

I was breastfeeding at the beginning of all of this and had a massive oversupply (enough for nearly quadruplets.) Doctors swear up and down this is a breastfeeding issue (I had a negative skin biopsy right when all of this started), but I've never had flu like symptoms to indicate infectious mastitis, no elevated white blood cells and my boobs are still far from normal even with 5 rounds of antibiotics and a culture of my milk (the last of which done a month ago, came back clear!)

I do have swollen lumps (suspected lymph nodes) detected on an ultrasound. This is bilateral and the same symptoms are on both sides and progressed at nearly the same rate (although one breast swelled first a few days before the other.)

I'm feeling so helpless because my symptoms don't line up with mastitis and even after quitting breastfeeding three weeks ago, I still have ALL of the symptoms listed above. Anyone experience anything like this with IBC or have any thoughts? I'm scheduled to go back for a repeat ultrasound on 11/10 to check on the inflammation, skin thickening, and small lumps seen on the ultrasound, but that seems like wayyy too far away considering this has already been going on for 2+months and hasn't cleared up.

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  • hapa
    hapa Member Posts: 920
    edited October 2020

    Ask for a punch biopsy. If it is IBC, it's not something you want to mess around with.

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  • Sisel2
    Sisel2 Member Posts: 3
    edited October 2020

    I know that's why I'm worried 😣 I got a biopsy in August about two weeks after symptoms started and it was negative in both breasts. Do you think that rules it out? Or could it have been too early to be detected?

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  • hapa
    hapa Member Posts: 920
    edited October 2020

    This was a punch biopsy of the affected skin? If it was negative, then it's unlikely this is cancer. If you're having symptoms then it's not too early to detect the cancer. I don't know what breast feeding issue would cause this, press the doctors on what it could be. It's possible you have some kind of fungal or other infection in the skin. A skin infection would explain inflammation, thickening and the enlarged lymph nodes. Could also be an allergy to something, are you using lotion? It is very odd for cancer to affect both breasts equally at the same time, that detail alone makes me think allergy.

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  • Sisel2
    Sisel2 Member Posts: 3
    edited October 2020

    Okay-- that is really great to hear. Thank you for your response! :)

    The biopsy was taken from the area that was the most red and thick (least amount of feeling in that area.)

    Is it normal for IBC symptoms to change in their appearance over time? For example, the inside of my breast was EXTREMELY thick. Like moldable it was so thick. As that started to lessen, that is when all of the other symptoms, including the redness came on. Now, skin is thicker on the outside of my breast, but still no where near as thick as it was on the inside. Also, the redness has changed from bright red to like a dark purple, almost bruise like (but definitely not a bruise.)

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited October 2020

    Bilateral IBC is pretty much unheard of, like maybe one case in the medical journals. You had a biopsy which ruled it out. If your gynecologist can't help you (you have been back since August, right?) see a dermatologist.

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  • Pamplemousse
    Pamplemousse Member Posts: 8
    edited February 2021

    Sisel2, can you please give us an update?

    I'm 30 weeks pregnant with my first child and going for a core biopsy tomorrow morning because for 2 months now, my breasts have become very big, red and inflamed ( hot to the touch, like a sunburn effet) . The sunburn effect comes and goes but the redness is here almost constantly.

    It initially started below the nipple on my left breast (also had some bruising/purple effect) then the right and now both breasts are fully red.. I have peau d'orange as well and US showed thickening of the skin, so IBC has now to be ruled out with core biopsy.

    Would love to know how you're feeling now. Thanks!!!

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