IDC or IBC? Peau d'orange with IDC?

I just saw your post, and I am sorry that no one has replied to you.  Hopefully, by now you have gotten some answers, but I wanted to share with you.  I was diagnosed in September of 2011 with IDC and treated with lumpectomy, chemo, radiation, and now arimidex.  At some point after the surgery, my breast became red, larger and heavier and a little orange-like in texture than the other one, and the nipple was retracted.  I did not know anything about IBC then, so I just thought the changes in my breast were due to the surgery and later on the radiation.  I don't know at what point my breast changed, but I thought the retracted nipple may have been because the tissue was removed just over it and it made sense to me that maybe the breast was kinda caving in there where the tissue used to be.  The redness I attributed to the radiation.  Then as time went on and I read about IBC, I did start to worry about that but figured that my doctors would tell me if they saw anything to worry about.  I even asked them about the heaviness and was told that was normal due to increased lymph-maybe some lymphedema that would gradually diminish.  I also asked about the redness and was told that was normal due to the radiation and would also diminish.  The retracted nipple has lessened over time.  Now it does not retract but also does not pucker up like the other one does on touch.  The last couple of mammograms I have had, the radiologist has told me that the skin is thicker around the breast now and that this is my new normal.  The odd thing is that the last couple of times I have seen my onc, she now seems a little concerned about the redness and thickness of the breast.  I told her that it is not as red as it used to be, and she seemed okay then. But now I am worrying too because I have done more reading about IBC and it is a much worse type of cancer and much harder to diagnose.  I discovered, however, that event the oncs and radiologists are not usually able to diagnose this disease because it doesn't show up on a mammogram as it is not a lump.  You have to have a biopsy in order to get it diagnosed.  The one main reason that I don't believe mine is IBC is because from what I have read, the symptoms come on pretty suddenly and get worse over time.  Good luck, and if you are still worried, I would ask for a referral who specializes in IBC.

First, it's important to know that peau d'orange is also associated with cellulitis. I happen to know that because I've had both cellulitis and IBC at different times and there isn't a heck of a lot of difference in the looks of the two.

Second, IBC can be IDC with lymphatic invasion. Mine was. When 2/3 of the breast is involved (in the skin), that is one of the criteria for IBC. That's why they say that IBC is a clinical diagnosis, because someone has to assess whether 2/3 of the breast lymphatics is involved. There are a couple of other clinical conditions, but right now I can't remember them.

When I was diagnosed with IBC, I remember only two tests that tended to point to IBC. One was an ultrasound where the skin looked thick, and the other was a biopsy of the skin where cancer cells were detected.

I had a lumpectomy end of May, with mammoplasty/reduction on both breasts and sentinel lymph node removal (they took three).. After my drains were removed, I had infections and a very large seroma. When that all settled down enough, I started chemo  in June.  Shortly after starting chemo, I noticed the stretch marks in my cancer side breast were very swollen and then I noticed soon after that the skin had the orange peel look. Both my surg onc and med onc thought it was an infection again so I went on several courses of antibiotics and nothing worked.. so they said they thought instead it was chemo related. It never went away.. then had radiation and it got worse.. rad onc thought chemo and radiation related too. Finished radiation in mid dec. The area has gotten larger since and the skin feels really thick too. Now my shoulder and arm and hand on the cancer side hurt a lot. I don't know if the Lupron shot or the arimidex is causing that. I know it's really very unlikely I have IBC , but the fear is at the back of my mind. Pretty much half of my breast  has the orange peel skin and swollen ridges. I will mention the pain  when I go for Herceptin this week.. but I feel so neurotic when I mention things.. like I am totally freaking out for nothing. I guess what I am asking is, how long does it usually take for things to settle down after surgery, because basically, that's when this all started. Thank you for any advice

Thank you dancingdiva!  I guess that they found nodules in my lungs during radiation set up is not helping..even though they had shrunk a little by the follow up ct scan.  I need to get past worrying that my Drs will be annoyed by my questions and fears.

Thank you Kicks. You are right!! I had my Herceptin today and I did tell them everything and asked questions. They think the pain I am having is either the Lupron shots or the Arimidex so they gave me some prescriptions. They still think the swelling in my breast is related to surgery, chemo and radiation. They did tell me if it got any worse that I should see my surg onc  sooner than my June appointment. They really don't seem concerned about the breast swelling at all, because it doesn't look red and angry, just swollen. They were concerned about the pain and they asked if my arm is swelling..which it is not.