Dx with IDC, but could it be IBC, too?
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The CNB I had in February diagnosed IDC, but I think the surgeon overlooked the funky things happening on the outside of my breast, too. Itchy nipple, scaling skin, swollen breast, slighlty inverted nipple, besides the palpable lump. Bx confirmed it in one axillary node, and PET scan showed it in one intramammary node.
Anyway, I've had two rounds of neoadjuvant TAC, the swelling and other symptoms have gone away, but now I've developed peau d'orange like texture below my nipple. So far, no discoloration, just the pitted skin.
I'm going to point this out to my onc to see what he says, but wanted to toss it around here to see if it might just be from a compromised intramammary lymphatic system rather than actually IBC. I need a skin biopsy for a definitive answer, right?
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My skin biopsy was neg. but by presentation my doctors agreed I had IBC - sudden onset, swelling, pinkness. It turns out that the aggressive treatment for IBC is the same for those tumors over 2 cm, grade 3, Stage III with node involvement. I hope you have a compromised lymphatic system rather than IBC. I would get another opinion though since the doctor didn't seem to pay attention to what was happening on the outside of your breast.
My treatment consisted of neoadj. Cytoxin (4 rounds), Taxol (4 rounds), MRM and radiation. I now take Arimidex.
I wish you well and will be thinking of you.
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I was at my onc today. Pitted skin was gone, but I had remembered that it was present right after a hot shower. He said, if it came and went like that, not to worry.
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Ok I'm still having some symptoms even after two TAC tx...a slight raised red rash on an outer area, and the itchy spots, small but distinct from the rash. I will confront my onc today before tx#3. I think I should be doing dose dense chemo but he has me on every three weeks. The symptoms seem to come in the last week before the next treatment which would tell me that the drugs are wearing off.
But what do I know? I'm just the patient.
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Nancy,
Have you asked for a skin biopsy? Hopefully it is just an infection but this way you will know for sure. I had posted about ibc symptoms for a friend and some ladies suggested a skin biopsy. Good luck with visit and tx#3. Ok after typing this I just read shrinks post that her skin biopsy was also neg but she had ibc. There goes my suggestion to you.
This is hard--how do they diagnose ibc if it dose not show up in mammograms and ultrasound's or skin biopsy.
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It's almost strictly a clinical diagonosis based on the symptoms presented. Mine have evolved over the course of my treatment, not all presenting at the same time and not in any clear sequence.
My first symptom was a slightly enlarged left breast that felt firmer than my right breast. That breast has always been a tad larger than my right, so it wasn't alarming. Then I noticed a thickening in the area above my nipple. That was just after my semi-annual gyn appt where he did a manual exam and didn't notice anything. My screening mammo showed an area of concern so I then had a diagnostic mammo and and ultrasound, followed by a core needle biopsy that showed IDC in the breast and an axilary lymph gland. That was ordered by a surgeon I consulted.
Some secondary symptoms had developed, like itchy spots/rash, slightly inverted nipple, but no peau d'orange or inflammation. I was sent on to the oncologist who decided to start me on three neoadjuvant doses of TAC every three weeks after consult with surgeon to get my tumor down enough in size for a clean mastectomy.
After the chemotherapy started, I noticed that almost immediately the breast went down to an almost normal size, became much softer, the nipple became much less inverted, and the lymph gland was not palpable anymore. But by the final week each next treatment, another IBC-like symptom would crop up. Before tx#2 it was the slightly dimpled patch of skin under my nipple that showed clearly after a hot shower, but faded after a few hours. The onc had to really look hard for it. Just this week, before tx#3, it was a patch of itchy rash on the upper part of the breast. It came and went over the course of a couple of days, and is almost gone tonight. But a very small area of the deep pore texured skin is back just on my areola, about the size of my index finger tip.
I don't know anyone else who has had a similar series of symptoms where it hasn't been IBC, and it disturbs me that these have cropped up while I am having active therapy. I discussed this with my onc today, and he said the treatment would have been the same if it had been classified as IBC, but I said if after the PET and MRI that is planned in the next couple of weeks, there is no clear diagnosis, I'd like it to switch to dose dense chemo for the last 3 rounds...and do them before surgery (they were planned for post surgery).
He thinks the surgeon will have the greater say about it. I think I have clear reasons for my decision, and will push for that.
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