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Worried about IBC. What were your IBC symptoms?

summer0720 Member Posts: 3
edited November 2023 in Not Diagnosed But Worried

Good day!

I am a 30 year old mom of 2 little girls. Currently being assessed for breast disease.

Here's a little background:

In February 2020, I felt a lump in my RIGHT breast, the skin of the areola turned very dark, and part of my nipple inverted. I went to my OB-Gyn and he ordered mammogram and breast ultrasound which came back clear. He said it was probably nothing. Then I noticed, my LEFT breast was having spontaneous clear fluid discharge. Which I ignored coz google said clear is basically fine. I went on with my life. Come February 2021, I went to my OB Gyn for my Well Woman Exam and he felt the lump again, and sent me for another mammogram and ultrasound. I told him that my LEFT breast was having spontaneous clear discharge, he palpated it and didn't feel any lump, but noticed that it had gotten bigger. Again, mammogram and ultrasound came back clear. In September 2021, my right breast lump increased in size, I was then referred to a breast specialist. The said doctor dismissed everything. She said "I can feel something, but I trust the imaging results more than my hands. That's probably just a piece of breast tissue that feels like a big lump." So my OB Gyn prescribed antibiotics for the left breast and referred me to another breast specialist for the right breast coz he was starting to get concerned. The next breast surgeon saw me on February 2022, she told me that 10-15% of breast tumors do not show up on imaging. She felt it and said it was about 5 cm. But was concerned about my LEFT breast coz she said it looked pink and is way bigger than my right breast. I told her about the discharge and that there was no lump in my left breast but it definitely increased in size. She palpated it and said, "Okay, no lump but it's definitely pink and very cold to touch. Interesting." I had my breast lumpectomy in March 2022, she was aable to get 2 masses from breast, one was 5cm, and the other one was almost 6 cm. None of them showed up on any imaging. I went for my post op follow up and was told that they were benign but definitely solid masses and they couldn't identify what it was. She brought up the pink tinge of my left breast again and referred me to MD Anderson. She said they have advanced technology and can help figure out what's going on with my left breast. My symptoms were LEFT breast enlargement, spontaneous watery discharge, breast pain, eczema like rash that comes and goes, extremely cold to touch, and the entire breast had a pinkish tinge to it. I went to MD Anderson in July 2022, it was a long appointment. Consultation, breast ultrasound, mammogram with tomo, and another consultation all in one day. Imaging came back clear. They have ruled out mastitis, but said that it was definitely concerning. So they put me under surveillance and wanted to see me in 3 months and said that if the rash comes back, go see a dermatologist. Due to several health issues that year (major surgeries, covid, transient ischemic attack) I wasn't able to come back until June 2023. The rash came and disappeared many times. I told them that the pain has gotten worse, spread to my back. Spontaneous discharge is still here, breast is definitely pink, no peau d'orange skin though. It's not warm but very cold to touch. They did another set of imaging, this time it was mammogram with tomo, ultrasound, and breast MRI. All came back negative. They asked me to come back in 3 months again and said that they couldn't discharge me as a patient yet coz I'm still considered "under surveillance". Last November 20th, I had my follow up check up, the doctor said "Okay, no need to wait for the rash to appear, I need you to see a dermatologist and they have to take samples of the skin. It's still pink and it's not going anywhere at this point." Then she said I need to have another mammogram with tomo and ultrasound but also told me about the risks. She said that it's not healthy to get the mammograms so close together, in my case 5 months apart, so she said it's up to me. Or she can test my prolactin levels and wait for the skin biopsy result before undergoing under mammogram. But she said I definitely need it. She wants to rule out IBC and Paget's. But just wanted to make sure that I'm aware of the risks. Prolactin came back normal. Today at 5:30pm, I have a skin biopsy scheduled.

I am at loss. But also wanted to feel hopeful. I'm just scared that it might be too late if it really is IBC, because the symptoms have been going on for a while now.

Wanted to ask if any of you had similar symptoms as mine? Cold to touch and didn't develop peau d'orange?

Thank you very much!


  • moderators
    moderators Posts: 8,287

    Hi @summer0720! We're sorry to hear about your breast changes and the challenges you've been facing. It's been a few days since you posted… Were you able to get the skin biopsy done?

    We hope this post helps you get more visibility and responses from other members. Sending you positive thoughts your way, and best of luck with biopsy results!


    The Mods