A question about diagnosis from a worried patient.
Hi everyone — moderators, please let me know if this is allowed and remove if it is not! I want to make sure I am doing my due diligence in this diagnosis process, since with IBC you really have to advocate yourself. I have also posted in the “awaiting test results” forum but I am here with a question— precededed by a somewhat long background story!
Some background: I am 36. 2.5 weeks ago I had what looked like a pimple or ingrown hair next to my left nipple. I popped it forcefully, it was painful & pus came out. Sorry for the TMI there. The next evening I felt the breast swelling in size and after a shower I saw that the area surrounding the pimple/cyst was red, all around my nipple.
I went to the ER the following day & they did a quick ultrasound that showed skin thickening but no abscess or pus, and my bloodwork indicated no infection, so they gave me an antibiotic for protocol and told me to follow up with the breast cancer center. The radiologist called me & had me come back in to the women’s imaging center specifically, where they specialize in breast cancer. By now my breast was pinkish and marbled in the area that had been red. The ultrasound tech said to me, “this is not IBC— I can see on here where you picked this pimple. It’s probably infected.” She assured me they see IBC often and she said my breast would look much more swollen and my nipple would invert but it’s so different for every woman so I know that isn’t so comforting…
The radiologist reviewed my updated US & mammogram and said the skin thickening was over the pimple-thing, with an anechoic area underneath that he felt indicated fluid or pus. Axillary lymph nodes were normal. I have read however that IBC can show up on ultrasound as skin thickening with anechoic areas. They recommended a followup with a breast surgeon to be safe. My breast at this point was quite swollen. They seemed confident, though & said a localized infection likely would not show up in my blood work. The radiologist also said it will take a long time to heal.
I saw a breast surgical oncologist with a private practice right away, though his not being connected to a major hospital concerns me. He switched my antibiotic & I told him I was afraid of being misdiagnosed and he assured me, “I’m not sending you on your way, you’ll be back in a week.” He warned me the skin on the pimple-thing would start to peel and said he really did not think it was IBC— but again he is not an IBC specialist . I did see improvement with the antibiotic — the pink area started to diminish & fade to a light brown. My breast looked almost normal.
However, I know many women have found improvement with antibiotics— redness dissipating, etc— but still had IBC. I have random shooting pain throughout my breast (which I was attributing to a rib deformity on that side I have due to scoliosis, but now I don’t know anymore), and the “rash” around my nipple & cyst shrank but is still discolored; it’s faded to a light brown and looks scaly/peeling. The surgeon assured me this is part of the healing process and that my breast looked much better. I told him I was still scared because after scrolling through this forum, I see so many women saying the symptoms of IBC came and went, faded with antibiotics, etc. He offered to do a punch biopsy if I was worried
He performed it 3 days ago. He only took ONE sample. From my understanding, the standard is two— I even asked him and he said he was just going to biopsy the cyst/pimple area, where the skin thickening was, the focal point of the rash. I’ve read here about negative punch biopsies but the clinical diagnosis remains. While my breast certainly looks better, it feels quite dense and heavy since the biopsy & is sagging lower than the right. I have indentation marks on the left breast from my bra. Should I push for further workup if this comes back negative? A core biopsy? I don’t think he will do a lymph node biopsy as my lymph nodes appear normal on US. I am concerned that he didn’t follow protocol but I think it’s because IBC is so rare. I’m absolutely stressing my husband and family out with my fear. But I am concerned about my breast swelling and the fact that some survivors, who were sweet enough to share their stories with me, told me they had negative punch biopsies.
I apologize for the ramble and if this is not an appropriate place for this question— will delete immediately, if so! Thank you to this forum and everyone here for your kindness.