Suspected IBC, awaiting results & very scared.
Hi everyone. I'm 36. I posted in the IBC forum too … just looking for support. About 2 weeks ago, I found what I thought was an ingrown hair on my left breast, near the nipple. I popped it and pus came out but it did not go down, it swelled up instead. The next day, it felt like my breast was getting larger; it was uncomfortable. The following evening the area around my nipple and the central pimple-thing was completely red.
I went to the ER, where they found skin thickening on the ultrasound but no collection of fluid, so they told me to go to oncology (and gave me antibiotics anyway, which didn't seem to work). The radiologist at the women's imaging center — they image for breast cancer specifically — called me to come back and I had a followup mammogram & US on my left breast a couple days later. They saw a small area of skin thickening on both, at the center of the red patch. On the US, there was an anechoic area beneath the thickened skin. The tech said to me, "I can literally see where you picked at this thing." Lymph nodes were normal. The radiologist told me the studies were consistent with a cyst/boil but to follow up with a surgeon or dermatologist to be safe. He told me it would take a good long while to heal. They seemed so confident and said they've seen IBC in their practice "unfortunately often" and to try to calm down.
Well, I did see a breast surgical oncologist right away, who reviewed my imaging and did a clinical exam. He has a private practice which makes me think he may be less experienced in IBC than a hospital setting. He also felt it was just a cyst/boil, changed my antibiotics and told me to expect the skin to peel a little. Sure enough, it did, the redness fade, though it was still discolored in the area that had been red (as if it was getting lighter in color). He said it looked like night & day and, like the radiologist told me, that it would take time to heal. But I told him I'd spoken to women with IBC online (I have been chatting with a few lovely survivors) who said antibiotics temporarily relieved their symptoms too, but ultimately they had IBC. He said to me, "I have seen and treated IBC and that's not what this is," but offered to do a punch biopsy for peace of mind, and warned me it may flare up again post-biopsy.
I had the biopsy Friday. It's Sunday. My head is spinning. It doesn't seem to be getting better. It seemed to be healing but now post-biopsy, my left breast feels much larger and heavier than the right— my bra is leaving marks, cutting into it. I am having tenderness throughout and it is sagging more than my right breast. The swelling had gone down previously which gave me false hope.
I keep seeing experiences here and elsewhere about how punch biopsies came back negative, antibiotics helped, etc — but ultimately it was still IBC. I feel panicked about the results and terrified that I can't even trust these doctors… even breast specialists. Most IBC survivors I've spoken to said this was their experience too. I was trying to get pregnant this year; my husband and I just got married. I am prone to health anxiety and it's taking a toll on both of us.
Just sharing here, looking for support.and apologies for my ramble.