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Suspected IBC, awaiting results & very scared.

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aflowerfield
aflowerfield Member Posts: 11
edited April 2023 in Waiting for Test Results

Hi everyone. I'm 36. I posted in the IBC forum too … just looking for support. About 2 weeks ago, I found what I thought was an ingrown hair on my left breast, near the nipple. I popped it and pus came out but it did not go down, it swelled up instead. The next day, it felt like my breast was getting larger; it was uncomfortable. The following evening the area around my nipple and the central pimple-thing was completely red.


I went to the ER, where they found skin thickening on the ultrasound but no collection of fluid, so they told me to go to oncology (and gave me antibiotics anyway, which didn't seem to work). The radiologist at the women's imaging center — they image for breast cancer specifically — called me to come back and I had a followup mammogram & US on my left breast a couple days later. They saw a small area of skin thickening on both, at the center of the red patch. On the US, there was an anechoic area beneath the thickened skin. The tech said to me, "I can literally see where you picked at this thing." Lymph nodes were normal. The radiologist told me the studies were consistent with a cyst/boil but to follow up with a surgeon or dermatologist to be safe. He told me it would take a good long while to heal. They seemed so confident and said they've seen IBC in their practice "unfortunately often" and to try to calm down.

Well, I did see a breast surgical oncologist right away, who reviewed my imaging and did a clinical exam. He has a private practice which makes me think he may be less experienced in IBC than a hospital setting. He also felt it was just a cyst/boil, changed my antibiotics and told me to expect the skin to peel a little. Sure enough, it did, the redness fade, though it was still discolored in the area that had been red (as if it was getting lighter in color). He said it looked like night & day and, like the radiologist told me, that it would take time to heal. But I told him I'd spoken to women with IBC online (I have been chatting with a few lovely survivors) who said antibiotics temporarily relieved their symptoms too, but ultimately they had IBC. He said to me, "I have seen and treated IBC and that's not what this is," but offered to do a punch biopsy for peace of mind, and warned me it may flare up again post-biopsy.

I had the biopsy Friday. It's Sunday. My head is spinning. It doesn't seem to be getting better. It seemed to be healing but now post-biopsy, my left breast feels much larger and heavier than the right— my bra is leaving marks, cutting into it. I am having tenderness throughout and it is sagging more than my right breast. The swelling had gone down previously which gave me false hope.

I keep seeing experiences here and elsewhere about how punch biopsies came back negative, antibiotics helped, etc — but ultimately it was still IBC. I feel panicked about the results and terrified that I can't even trust these doctors… even breast specialists. Most IBC survivors I've spoken to said this was their experience too. I was trying to get pregnant this year; my husband and I just got married. I am prone to health anxiety and it's taking a toll on both of us.

Just sharing here, looking for support.and apologies for my ramble.

Comments

  • moderators
    moderators Posts: 8,174
    edited April 2023
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    No apologies necessary! That's what we're here for. The waiting is truly the hardest part. We're here for you, and hope so much that all is benign.

  • tb90
    tb90 Member Posts: 281
    edited April 2023
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    aflowerfield: I have one question for you. What would it take for you to accept that you do not have IBC? Please really think about this. If you cannot accept medical assessments but instead focus on all the exceptions, what could possibly put your mind at ease? I am so sorry that you are having this experience. Health anxiety is a bugger. But creating this level of stress for yourself and your partner over what is most likely a boil, is such a shame and a waste. You have been responsible and have sought medical care. But once we have a fear in our head, we start to experience all sort of symptoms and focus on all sorts of horror stories. Please try to focus on your relationship and your future family plans. And if you honestly cannot answer what could possibly be said to ease your mind, please seek counseling for a health anxiety. You do not need to continue living with this level of stress. Please be open and honest with your medical provider.

  • kaynotrealname
    kaynotrealname Member Posts: 410
    edited April 2023
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    It was very good of him to do a punch biopsy but I think the first thing to remember is that IBC is rare. It doesn't seem like it on this board because of course we get everyone with breast cancer here. But it is. I know of no one who has ever had it personally and I know now plenty of people with breast cancer. Secondly, I struggle somewhat with health anxiety also although I am much better now. But my husband told me something one time a few years ago when my panicked thoughts were just circling and I'd given myself cancer for the fifth time that day that really helped. "Cancer is not tricky. It's not trying to put on a costume and make you think it's something else. That's now how it works." And I'm saying the same thing to you. You have all the symptoms of a boil, your doctors think it is a boil, and it is almost certainly a boil. There is absolutely no reason to think this is cancer. Try and remind yourself of facts and say those over and over again to yourself. Don't repeat your fears because there's no real basis for them in reality. Good luck and I hope this time passes for you quickly because we all know how tough it is to cope while waiting.

  • aflowerfield
    aflowerfield Member Posts: 11
    edited April 2023
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    Thank you both so much for your replies. I completely hear you and am trying to think clearly! I love the idea that it isn’t hiding — I am just not sure why my entire breast is swollen and sagging, the way it does with IBC, or what to make of the many women who told me they had skin thickening in US and saw temporary improvement with antibiotics. Someone here even said her symptoms went away, then returned.The indentations from my bra have me reeling.

  • kaynotrealname
    kaynotrealname Member Posts: 410
    edited April 2023
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    I'm not an expert but boils can be something else from what I've read. Especially if they've gotten infected. My guess is a lot of inflammation comes along with it.

  • aflowerfield
    aflowerfield Member Posts: 11
    edited April 2023
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    Thank you everyone, so so much. Especially to the moderators and all here who have been kind enough to address my health anxiety too, which is very real. I also wanted to follow up with one more thing — if anyone knows. I am noticing a small brownish patch of discoloration on the other side of my nipple now, as the rash on the left side heals. In addition to the swelling of my breast, is this consistent with IBC, as well? Thank you kindly

  • harley07
    harley07 Member Posts: 302
    edited April 2023
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    @aflowerfield - I’m sorry you are having such an anxious time and it’s good you took steps to check out the rash. I’m curious why you feel stories on an Internet forum would do a better job of diagnosing your condition than two doctors that have seen the rash and have years of experience and training. I think this is a case where you need to trust science. Are mistakes made? Yes, but it’s highly unlikely when 2 doctors give the same results.

    I’m also impressed that you were able to get appointments so quickly, so that is something to be grateful for.