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Topic: IBC signs months later?

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Dec 5, 2020 08:38PM

anxiousismymiddlename wrote:

hello! I'll try to make a long story short!

I was diagnosed with IDC in October. BMX is coming up. My masses were first "discovered" back in April/May. They're very palpable and close to the skin.

A few days After my initial core biopsy the skin above my masses (they're all close together) started getting pink. The surgeon says this is happening because of how close they are to the surface. My radiation oncologist also concurred. Made sense at the time. My MO didn’t seem concerned either. I had an MRI last month and the results didn’t show anything that would really suggest IBC even though the pink skin was present at the time. I know it Can look webby and diffuse on an MRI and my tumors were focal I guess is the term? No skin enhancement just mild skin thickening above the larger mass. I again asked my surgeon about IBC and the mild thickening and she was quick to say “oh. No! That’s not you!” But now I just feel like a sitting duck staring at this pink skin with lots of anxiety. I’m going to call the surgeon Monday to discuss and see if she can do a skin biopsy.

My question is - I know IBC doesn’t generally present with a lump, so am I crazy for thinking a lump can come months in advance of the skin changes? Has anyone ever heard of a lump presenting first? Or maybe can non-IBC cancer turn into IBC in time?

I have a little swelling in the pink skin also that the surgeon also attributed to the superficial mass. Does swelling show up as “skin thickening” on an MRI? She did say the skin and mass are not attached to each other.... and an ultrasound of my lymph nodes done a few weeks ago showed no signs of abnormalities.

I’m also wracking my brain as to why this started happening right after my biopsy. I know the chances of a reaction to the metal clips are rare but it makes me wonder. I can’t even wear earrings of any kind because I have redness and swelling and itching within minutes. I stupidly did not mention this beforehand and it just crossed my mind recently.

Dx 10/2020, IDC, Right, Grade 2, ER+/PR+, HER2-
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Dec 5, 2020 08:45PM anxiousismymiddlename wrote:

yikes I did not make a long story short lol!

Also just want to add I have no warmth. The skin itself doesn’t feel thick. It’s pretty soft actually But the pink does fluctuate. It’s very light when I wake up and randomly darkens throughout the day. I haven’t figured out what makes it fluctuate (body temp, no bra vs bra, etc)

Dx 10/2020, IDC, Right, Grade 2, ER+/PR+, HER2-
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Dec 5, 2020 09:11PM AliceBastable wrote:

I have metal sensitivities (never tested for allergies) and told the interventional radiologist before my biopsy. She detached the metal clip, but then I wound up with clips anyway from the surgery, and I haven't had any problems from them. But I don't know if it makes a difference how close they are to the dermis.

If you've already asked your medical team about the skin issue and they don't think it's anything to worry about, I'm not sure what you're expecting from anyone here. I'd trust the people with medical degrees and years of experience, who have actually examined you and seen your scan results.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Dec 5, 2020 09:26PM anxiousismymiddlename wrote:

just “expecting” or asking for maybe some insight from people who have gone through it, as it know it’s very often misdiagnosed. Thanks!

Dx 10/2020, IDC, Right, Grade 2, ER+/PR+, HER2-
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Dec 5, 2020 10:05PM Moderators wrote:

Hi anxious, Sorry for what you are going through, and the uncertainty. Posting here a link, that could be helpful re. IBC. Please keep us informed as to what you learn!


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Dec 6, 2020 12:47AM sbelizabeth wrote:

I had a tiny lump that was very close to the surface, with a 3-inch circle of pink, peau d'orange skin above it. After a core needle biopsy determined the little lump was malignant, no one paid any attention to the pink, orange-peel textured skin until after a lumpectomy and sentinel node biopsy came back Stage III. It was an enormous shock for everyone. Only then was I referred to a very wise oncologist, who insisted on a skin biopsy. Sure enough, the dermal lymphatics were all clogged up with cancer cells. This information shifted my treatment into high gear, and they threw the kitchen sink at my cancer.

When breast surgeons hear hoofbeats, they look for horses, not zebras. But sometimes, rarely, it's a zebra. Most physicians have never seen a case of inflammatory breast cancer, and when they have, it's frequently advanced and obvious. The whole breast is swollen, red, hot, ridged, and dimpled. IBC can be more subtle, though. My advice is to insist on a skin punch biopsy of the pink skin, and if your care team resists, make them explain why not. If it's benign, oh well. A minor medical procedure for peace of mind. If there's malignant cells in the skin of your breast, though, it could very much affect your treatment protocols.

It's not my intention to scare you, and you're probably right--it's a metal allergy or some other benign weirdness. Please feel free to PM me.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Dec 6, 2020 02:05PM anxiousismymiddlename wrote:

Thank you sbelizabeth! :) Anytime you google breast cancer and pink/red skin it ONLY brings up IBC, Understandably. I will call the surgeon tomorrow

Dx 10/2020, IDC, Right, Grade 2, ER+/PR+, HER2-
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Dec 8, 2020 02:20AM blue22 wrote:

Hi Anxious,

I also had a lump. I had other IBC symptoms as well including pain and itchiness.

I also would insist on getting a punch biopsy just to be sure!


Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Dec 9, 2020 10:33AM - edited Dec 9, 2020 10:34AM by anxiousismymiddlename

thanks ladies! I'll be seeing the surgeon tomorrow. I spoke to her on the phone also and she said the tumor board (she called it something a little fancier, I forget the name) saw my MRI last month and unanimously agreed it was not IBC. And there was no skin involvement on that MRI. Not sure of the odds that things can change but we'll see tomorrow. As the MRI was done 6 months after initial symptoms of a lump, I'm holding out some hope. I think IBC would have made itself known on an MRI that far out

Dx 10/2020, IDC, Right, Grade 2, ER+/PR+, HER2-
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Dec 9, 2020 09:25PM anxiousismymiddlename wrote:

I know I’ll have answers tomorrow, but one more question for you all... did anyone notice your pink/red discoloration got worse when you were hot? My skin is not hot to the touchbut when I’m sweating/hot the pink gets darker. Sort of like a heat rash.

Dx 10/2020, IDC, Right, Grade 2, ER+/PR+, HER2-
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Dec 10, 2020 01:34AM blue22 wrote:

I don't remember the redness getting worse when I was hot.... but thanks to chemo brain there are a lot of things I don't remember! SillyHeart


Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Dec 10, 2020 09:33AM sbelizabeth wrote:

I discovered my cancer after I got out of a hot shower one morning and noticed there was a the 3-inch area on my breast that looked oddly pink. When I looked at it carefully with a magnifying mirror I saw the orange-peel texture. Later in the day, and when my gyno examined me a couple of days later, the pink had faded considerably.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap

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