Yes, another person freaking out about IBC!

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Renschwa
Renschwa Member Posts: 15
edited September 2020 in Not Diagnosed But Worried

Hello ladies-

Well let’s start with I was diagnosed IDC left breast, had lumpectomy, sentinel node biopsy on January 27,2020 & radiation March 9- April 3. Yes, right during height of pandemic here in NJ/PA. I survived all of that... I’m left with a breast that’s red & peau d’ orange from radiation, surgery & some breast lymphedema. But I’m ok with that. Also On tamoxifen since June.

About a week ago, after exercising & while showering I noticed what I thought was the same peau d’ orange on my right, non treated breast. The skin though is normal color I just see Twenty tiny indents. Without previous BC this is something I would not have noticed. Nevertheless, I totally freaked out. Kept eye on it for changes & haven’t seen any. It’s actually hard to see sometimes. Can only be seen in certain lighting. So today I saw the NP at my oncologist office. And of course with the lighting I couldn’t show her as well as I wanted what I see. But she kept saying everything looks & feels fine. And I’m trying hard to believe her! But again I exercised & took shower & saw the tiny pitting again when I got home. So frustrating! Luckily I see my breast surgeon & get follow up u/s mammograms in October. I also see my oncologist in October and gynecologist in September. If anything at all changes I’ll call the NP back as she did see me immediately-the same day. My concern is that maybe it’s just early IBC that’s being missed. I’ve had doctors in my past screw up before.... I have some paranoia going on. Just curious if anyone out there can relate or offer any helpful advice. Many thanks in advance...jersey girl

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited September 2020
    You have ONE very iffy symptom out of a list of many that define IBC. And IBC does not have a "Now you see it, now you don't" appearance. I'm trying to figure out why so many of the women who are convinced they have IBC sound almost - disappointed? - instead of relieved when their doctor tells them they are fine. My flabby old ass would be turning cartwheels.
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  • Renschwa
    Renschwa Member Posts: 15
    edited September 2020

    AliceBastable, believe me, I was relieved at first after talking to the NP, not disappointed at all! Some of us have had bad past experiences being mis-diagnosed or experiences with not so great doctors, so that sometimes we doubt things even when a doctor tells us we are ok. For me, the stupid doubt snuck back into my brain when I saw this pitting look on my skin again at home that I feel I just wasn’t able to show the NP properly in the office due to the lighting. So yes, I’m still a little scared and doubtful. I do suppose if it were IBC it would be more obvious, and would be seen in any lighting. I’m also large breasted which can make a difference as to how things look. By no means am I trying to make light of IBC or any other situation women on this board find themselves in. My heart goes out to everyone here who has found themselves needing this forum.

    I think Dr. Google is a BIG problem here because any breast skin issue you google comes up as IBC. Because of its aggressiveness, women freak out. My nurse today said I did the right thing by coming in to be looked at. Better safe than sorry. If there’s any further change, oh yeah, I’ll go right back. You do have to be your own advocate sometimes. I have regrets due to times when I was not. I also know that patients who have direct experience withan illness/disease are sometimes better at explaining things than doctors - no offense to any docs out there.

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  • blue22
    blue22 Member Posts: 280
    edited September 2020

    A lot of people come here thinking they have IBC, most do not. If the NP didn't see anything, and you don't have any other symptoms, you should stop worrying. It sounds like you have upcoming appointments soon, so you can address your concerns at that time. In the meantime, focus on your health, that is the best you can do!



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  • Renschwa
    Renschwa Member Posts: 15
    edited September 2020

    Blue22, thank you for responding. I will do my best to keep calm until my October appointments.

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