Concerned about IBC

EurekaCatLady · August 2017

Hi all,

I am a 32 year old wife and non-bio mother of one. There is no breast cancer history in my family. On July 1st I noticed a bright red mark (around 1.5 by .75 inches) just to the left of my left areola. The mark doesn't look like any rash that I had ever seen (it is smooth to the touch and it almost appears vascular) and I was alarmed by the speed at which it appeared, so I went to Urgent Care. The doctor there barely looked at it, diagnosed me with cellulitis, and put me on Bactrim (a particularly nasty antibiotic). The mark does not itch, but in hindsight my breast (or breasts?--I didn't really pay attention to it so I can't recall whether it was one or both) have been periodically itchy the past few months.

On day three of Bactrim I had a serious reaction that included non-stop vomiting, flushing, chills, uncontrollable feelings of doom (anxiety is a potential side effect), etc., and I wound up in the ER. At the ER they did an ultrasound of my breast and I was told that I had a normal, albeit apparently pretty fibrous breast. My nodes look normal and the lesion, whatever it is, doesn't extend down past the surface of my skin. I had googled my symptoms (I know, I know...), so I asked the doctor about IBC. She said it didn't look like a typical rash, or, in her opinion, an infection, but she dismissed the idea that it might be IBC.

I followed up the following week with an OBGYN who told me to put coconut oil on it and watch it. He's wasn't really sure what it is, but doesn't think it's IBC.

Over the following couple weeks the mark faded to a sort of brownish-pink, but it is still here and its improvement seems to have plateaued. Additionally, I have noticed that when I look at my breasts in natural light the pores on my left breast are more open than those on my right breast. I followed up again with an OBGYN office about my concerns about the mark's persistence and the enlargement of my pores, but was told that it's not close to severe enough to call peau d'orange. This time, I was told that I likely had an infection that was healing itself or is already gone but the inflammation is lingering because the capillaries of the breast are particularly delicate/sensitive. She prescribed a second antibiotic (Cephalexin), and the mark and pores do not appear changed from that.

I have never suffered from health anxiety before, but I'm having a very hard time quieting my worries about this. I think I am driving my spouse a bit crazy. One thing that is reassuring me is that it has been 40 days and my symptoms have not escalated. At the same time, it's been 40 days and my symptoms remain. No one seems to have a very confident answer as to what is going on and none of the doctors think that this is severe enough to biopsy.

I have a yearly gyno check-up in a week. Should I push harder for a biopsy? Should I let this go? I'm really not sure what to do. I have been reading these forums off and on for the past month. I know others have posted similar concerns and I didn't want to be a bother, but this is in the forefront of my mind every day. I can't seem to shake it.

Thank you so much ladies--I wish you all well and deeply appreciate any advice you choose to share with me.

P.s. Incidentally, in the last few weeks I've noticed that I can see a pretty noticeable heartbeat in my left breast and in my abdomen just below it. It freaked me out since it is in the affected breast and I feel like I would have noticed this before. As best as I can gather online, this doesn't seem related to any diseases of the breast, but may in fact be a manifestation of my recent anxiety.

Kicks · August 2017

No one here can tell you what is going on with your skin issue - only a Dr who actually sees you can DX. You've already seen 3 Drs who all said a skin issue.

There are a multitude of possibilities/probabilities for what is going on with your skin. IBC would be very unlikely. IBC is rapid in presentation and aggressive in progression - days.

For a skin issue that has been around as long as you say yours has been with no major progression it is all.most certain to be a skin issue that a Dermatologist would be the best to deal with it. It does not 'get better/fade'. It is rare - only between 1 - 4 out of every 100 who actually get a BC DX are IBC - skin issues are common.

IntegraGirl · August 2017

I have IBC. On the basis of my experience only, IBC progresses very rapidly. I went from "this seems odd" to "WTF" in a couple of weeks. I was diagnosed via ultra sound and biopsy. My breast tissue is so dense that the mammogram didn't show much.

Good luck

Shellsatthebeach · August 2017

I'm going by my own experience with something being wrong with my body and doctors ignoring me. I knew in my gut that their was something wrong and kept demanding medical tests until I would find the cause. I had two things tested (GI track, Thyroid) all tests came back clear. Finally, the doctors had me thinking I was a hypercontriact and eventually I stopped pursuing my issues. That was my mistake. Later, my BS commented always listen to your body. My disease had progressed to a more advance stage by the time I was sitting in her office. She was right. I knew something was wrong but didn't know exactly what and just gave up. Once my GYN/OB took me serious it was late in the game. So, my advice is don't push this aside if you feel that this is not right. Do you have a cancer center near you? They often know more when it comes to specifics about cancers than a general doctor. I wish you luck.

MTwoman · August 2017

I respectfully disagree with Shellsatthebeach. Going to a dermatologist IS continuing to pursue it. Just because the skin where the problem is located is on the breast, does not make it a bc or nothing issue. I agree that continuing to pursue answers is appropriate, just not necessarily at a cancer center. I'm with Kicks, 3 doctors have evaluated it (none of them Dermatologists) and Integragirl, the presentation on July 1, with partial response to anti-biotics (" Over the following couple weeks the mark faded to a sort of brownish-pink, but it is still here and its improvement seems to have plateaued") does NOT seem like IBC. Please do continue to pursue this, but perhaps a referral to a Derm is in order when you see your gyn. Good luck!

EurekaCatLady · August 2017

Thank you everyone for sharing your advice, reassurance, and experiences. It honestly helps. Asking to be referred to a dermatologist seems like a good idea at this point and I will likely push for that at my upcoming appointment--the main reason I haven't gone that route yet has been the wait, since they have notoriously long wait lists. Maybe even more than the mark, I've been pretty worried about the enlargement of my pores/hair follicles on that breast. My fear has been that maybe this is what peau d'orange looks like in the early stages, but I do understand and respect that you cannot DX my symptoms. Though I know that IBC is typically very quick-moving, I've read DX stories on these forums along the lines of "first x happened, then six weeks later my symptoms rapidly became more severe." I guess that has me a bit spooked about potentially waiting several months to see a dermatologist. Maybe that can be expedited upon referral--I will ask.

Thanks again.

MDOTSON1 · July 2020

Hi, eurekacatlady, I was reading your post and I was wondering did you get any update as far as the cause of the peau d orange ? Was it ibc or an infection? Thanks a lot for sharing

Beesie · July 2020

MDOTSON, this discussion thread is almost 3 years old. EurekaCatLady only ever posted here twice and hasn't been here since August 2017.So my guess is that she was not diagnosed with breast cancer.

MinusTwo · July 2020

And isn't this exactly what we have been telling the MODS about their new algorithm that is recommending threads? I run across this more often than not. Just a shame that they are recommending things that are not appropriate.

Concerned about IBC

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