Can’t help but worry about IBC

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Taralynn
Taralynn Member Posts: 99
edited October 2020 in IBC (Inflammatory Breast Cancer)

a little backstory - diagnosed last week with IDC grade 2, mid grade DCIS also found, mitotic score was 1, not sure if that's relevant but may be in terms of IBC. My appt with the surgeon is Thursday where I hope to get more info about hormones and everything else!

Ever since the summer, my worrisome area that brought me to the doctor has been slightly pink. Sometimes it's barely noticeable but never gets darker than a light pink. Not abnormally warm, not itchy, not painful, no peau de orange. It hasn't changed in size since it first appeared. It covers an area of thickened tissue that corresponds to my masses. The thickened tissue was my first indicator something might be going on back in May, then the pinkness started in maybe August. The tissue (which might be fibrosis?) feels very close to the skin.

I'm sure I'm jumping the gun, but I can't help worry about IBC. Anyone have insight?

Or could it be commonplace to have some redness over a cancerous mass and not necessarily be IBC? Maybe just inflammation from the fact that something bad is happening underneath?Whenever I google breast cancer and redness it only brings me to IBC so It's not helpful...


Edited to add - the US tech who was with me for my biopsy said there are microcalcifications scattered in this thickened area. I assumed micros Meant possibleDCIS and I asked if DCIS can cause the thickness and she said it could. Wondering if it can cause redness too then.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2020

    IBC progresses rapidly, in days, if not hours. It doesn’t sound like you have had a rapid progression of symptoms and you do not have a high grade rapidly progressing tumor. Have you brought your concern to your doctor’s attention?

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2020

    "my worrisome area that brought me to the doctor has been slightly pink. Sometimes it's barely noticeable but never gets darker than a light pink. Not abnormally warm, not itchy, not painful, no peau de orange. It hasn't changed in size since it first appeared."

    That certainly doesn't sound anything like IBC.

    Mention your concern to the surgeon on Thursday. Hopefully he/she can reassure you.

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  • Taralynn
    Taralynn Member Posts: 99
    edited October 2020

    Thanks ladies. I did bring it up at my initial appt with my gyno when this whole ball started rolling. I chalked it up to always touching and fussing with the spot at the time. She didn't seem concerned but at the time she also thought what I had felt cystic and not like cancer. I've only seen radiologists for my scans and biopsy since then, I haven't mentioned it to any of them but they've all seen my breasts obviously and I guess it didn't seem alarming to them

    I'm sure it's just my mind playing tricks on me. I know many signs point to it NOT being IBC but then I read on the ACS site that it can progress “rapidly" but they also say 3-6 months which I found odd and not so “rapid". And some ladies here have mentioned their symptoms weren't so intense. Sooo those things just make me wonder, of course I'll ask Thursday

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited October 2020

    I can only share my own experience. I found an area of redness and peau d-orange about 3 inches in diameter on the skin of my breast when I got out of the shower one morning. When I saw my gyno, the redness had faded (no longer hot and steamy from the shower) but the orange peel texture was there, very, very faint. She sent me for a diagnostic mammo, and they found a lump the size of a tic-tac, very close to the skin, directly under the "umbrella" of faintly pink, textured skin.

    At that point everyone ignored the odd skin and focused on the tiny lump. It was only after a lumpectomy and sentinel node biopsy strangeness (the surgeon couldn't find the sentinel node; it was so chock-full of cancer it wouldn't absorb any dye or tracer) that my new oncologist had the skin biopsied. Sure enough, it was heavily invaded with cancer cells in the dermal lymphatic channels. Inflammatory breast cancer, in its infancy.

    When doctors hear hoofbeats they look for horses, not zebras. In my case, the presence of a small lump--so commonly the way breast cancer presents--initially blinded everyone to the malignancy in the skin. My oncologist's insistence that we biopsy the skin changed my treatment plan and possibly saved my life.

    A skin punch biopsy is simple and fast, and to ease your mind, your surgeon should be willing to microscopically examine the skin of concern. I hope that you won't need to press the issue, but if so, press hard.

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  • Taralynn
    Taralynn Member Posts: 99
    edited October 2020

    Wow, that's really interesting sbElizabeth! Can I ask what sort of time frame that all happened in? Did your skin ever get worse

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  • Taralynn
    Taralynn Member Posts: 99
    edited October 2020

    Funny thing is I am always looking at this spot and it’s literally the smoothest patch of skin on both breasts. My skin is pretty sensitive and very fair and I have lots of Teeny bumps and reddish marks freckles and moles that I’ve had forever. But not this spot, smooth like a baby bottom. It seems maybe the “fibrosis” underneath is pulling it taught? Can’t wait for some answers soon!

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited October 2020

    I noticed the pink, peau d'orange textured patch of skin on a Friday morning and it didn't appear to change in the couple of days before I saw my gyno and had a diagnostic mammogram done. Within a couple of weeks I had a biopsy of the tiny lump. The lumpectomy was about six weeks later and again, I didn't see anything obviously or rapidly changing.

    Oddly enough, the trauma of the lumpectomy turned most of my breast flaming red. It subsided within a day or two. I was worried I had cellulitis, but now I know it was the clogged dermal lymphatics reacting to the surgical assault.

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  • Taralynn
    Taralynn Member Posts: 99
    edited October 2020

    The surgeon didn’t seem concerned about the pinkness. She did say the skin moves over the tissue, and that’s “very good”. Not sure if that’s good in general or good in terms of IBC? But, I will be mentioning it also to the MO when I meet with her.

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  • Sherlocked
    Sherlocked Member Posts: 46
    edited October 2020

    I had very light pink skin - never was red, bruised, or itchy. I developed very light peau d’orange a few months after noticing the pink. What I did have was breast swelling. So, I did have IBC, but it didn’t really advance very quickly, it was 4 months between noticing first symptoms and starting chemo. Btwtreatment was successful, I haven’t had any treatment or therapies in years. So, it’s not always lightning-fast. It’s better to be aggressive in the diagnosis though - insist on skin biopsy.

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  • Taralynn
    Taralynn Member Posts: 99
    edited October 2020

    Thanks Sherlock! I'm definitely going to bring this up again. I don't have swelling or anything else besides the pink skin. Did you have a mass at all?

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