Unsettled about Diagnosis

BoyMomma

Good evening! I am posting in hopes of receiving some reassurance, or affirmation if my concerns are legitimate, I suppose.

First, I should say that I have a strong family history of BC, have very dense and fibrocystic breast tissue, am 38 y/o, and have been getting annual mammograms and ultrasounds for the last few years. I have had breast MRIs with contrast for the last two years.

About 9 weeks ago, I had a small red spot appear on my right breast. It appeared about two weeks after my annual breast imaging. Over the next 4 weeks, it grew. I was seen by my gynecologist, then had an MRI, and have since been referred to a dermatologist. My doctor was torn between sending me to a breast specialist or the dermatologist, but we decided to start with the latter. On my first visit, he decided it was breast eczema and gave me a steroid cream. This was 6 weeks into the rash. After a week, the rash had begun spreading. The color has deepened and I have 4 spots on the other breast now. I returned to the dermatologist and he then decided it was Pityriasis Rosea.

I am still a little concerned: my right breast has gotten noticeably larger than the left, I am now 9 weeks in and the condition isn’t even remotely improving. The rash is intensifying on both breasts, I have NONE of the other symptoms associated with Pityriasis, and I have two spots that have developed on my nipple.

I suppose I will move my appointment up from the one scheduled six weeks out if it continues to spread, but wondered if anyone else has experience with this diagnosis or MISdiagnosis? My first rash is larger than the others and somewhat oval shaped (ringworm or any other fungus have been ruled out twice). The edges are blurring where they were once more defined. The red places in other areas are flat and patchy, rather than looking like pimples or bug bites. The places itch occasionally, and the initial onset involved DEEP stabbing pains, especially when I laid down at night. In general my breast aches pretty constantly.

I’m feeling like a hypochondriac, and I apologize for bringing it here, but I am not able to find much online OR with my doctors. They have all appeared a bit alarmed and ready to refer me for testing to rule things out, until my dermatologist. I’m on my second diagnosis in two weeks with him. I don’t feel like myself, which could simply be from the mental drain. My MRI was clear. My mammogram and ultrasound were reported to be Bi-rad 3, and I was told to return in 6 months for more imaging. That was before the red patches began because of some cysts they’re watching.

Thank you so much to anyone who takes the time to read this. If you have any experience that relates to any of this, I would appreciate the feedback. I will be following up with my doctors as they have asked...or sooner.

Beesie

You are not a hypochondriac. You have a very real health concern.

With the clear MRI and with the fact that this redness is now appearing on both breasts, I think that this is unlikely to be IBC. That said, other than an MRI, the diagnostic test done for IBC is a punch biopsy. Dermatologists also do punch biopsies to diagnose skin conditions, so this is something your Dermatologist can do.

Have you had a punch biopsy done? If not, since the redness appears to be speeading, I'd suggest you immediately ask the Dermatologist to do one. Hopefully that will rule out IBC (given that you've already had a clear MRI) and identify the skin condition causing this.

Good luck. Let us know how it goes.

OnTarget

Dont feel bad! You can never be too careful. Better to get it checked amidst a little doctor eye rolling than to find out you've been sitting on something that needs treatment.

My friend's BC presented as a painful, swollen breast. It could have been nothing, but thank goodness she went to the doctor. They did a mammo and said come back in 6 months.

She went back in 3 because it was so painful. That time they saw the ILC that had been hiding.

But on the positive side for you, if you had a clear MRI, I'd think that BC large enough to be visible is not as likely (I'm no doctor).

Thinking good thoughts for you!!

Moderators

BoyMomma, welcome to the BCO Community. We understand your fears, and wanted to let you know that you've come to the right place for support as you go through this. Please keep us all posted as to how things go for you, and let us know if we can be of any help.

The Mods

BoyMomma

Thank you all for your sincere responses! I will be requesting a punch biopsy soon. I will also update this post when I find out more. In the meantime, if anyone has experience with this type of rash, I’d be eager to hear about it. Thank you again!!

KMom57

I'm pretty new here, so no expert. I can tell you though that a rash on my breast is what took me to the breast specialist. It looked like a sunburn that was on one side of my breast, and it periodically itched —a weird, deeper itch that felt both on the skin and deeper. Sometimes an intense itch. My breast was also noticeably swollen. And around the edges, it felt almost hard. And ached. I also developed a very small, barely perceptible area of thick skin near the areola. My hyper focus on the breast was why I found the skin and the lump/thickening. Ultrasound found the lobular cancer. Oddly, the itchiness and redness went away before I even started treatment. But a punch biopsy was done anyway and was neg. I was still unconvinced it was not IBC until surgery. The surgeon told me I was lucky, the itch called my attention to it and after it did it's job it went away. Hopefully yours is a dermatology issue. But My advice nonetheless is don't let anyone make you feel like a hypochondriac. I told everyone who would listen for years that there was something wrong on my left side. They patted my hand and told me I was anxious. It wasn't anxiety. It was cancer that imaging missed. Make them listen to you until they figure out what it is. Hopefully it's a simple rash. Make them do whatever tests they need to do to prove that. And if I were you I'd get another mri at a different breast center just to be sure. I wish I had. Oh and most importantly, listen to your instincts whatever they are.

blue22

Hi BoyMomma,

No, you are not a hypochondriac - you have something going on and hopefully your doctors will be able to get to the bottom of it. It is good that your MRI is clear, and the fact that both breasts are affected makes it unlikely the rash is IBC. I agree that a punch biopsy would be a good idea to rule it out just in case.

You mentioned you have a strong family history of breast cancer - have you had genetic testing? Has anyone in your family had genetic testing? If not, that is something you should look into.

BoyMomma

@kmom57

I'm sorry that you had to join this group, but glad to hear your body sent you a warning that you listened to! Am I reading your message correctly that you had an MRI that was wrong at first?? I think that's why I'm talking myself in and out of a neurotic state...I had an MRI that came back clear. I can't find much out there about inaccurate MRIs and breast cancer. Thank you for your positive thoughts and personal insight. It really does help to hear someone else affirm that I need to trust my gut.

BoyMomma

I actually just received the Myriad kit in the mail today. I had been waiting for it to arrive for the last month. Thank you for your encouragement

MelissaDallas

BoyMomma, breast MRis have a less than 5% false negative rate. Combined with your mannograms and ultrasounds it is really unlikely

BoyMomma

@MelissaDallas, thank you so much for sharing that statistic. That helps my mind rest more. I plan to go on in to the dermatologist again if it’s not better in a week or so. An answer of what it is, or ISN’T, should help me rest better than I have for the last 9 weeks. Thank you again