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Please help reassure me while waiting

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mightymanda
mightymanda Member Posts: 2
edited April 2023 in Not Diagnosed But Worried

Hello All -

I apologize because I see this posted frequently but I really need any type of positive reassurance after the day I had today. I went to my GP to review a shoulder issue I have and while I was there I mentioned that I have been getting pink/red patches on the top of my right breast that go away on their own after a few days. After looking at a recent flareup of my breast, my GP said they wanted to rule out IBC. They did not want to mess around with breast changes and immediately scheduled me for both a mammogram and an ultrasound on Monday. Of course I googled IBC, and now I am terrified. I have three young children and I can’t stop crying at the thought of not getting to see them grow into adulthood.

I don’t have any swelling or any of the other symptoms specified on IBC sites so that is reassuring but I have seen here and in other forums other women saying that their cancer started as just a small patch of pink/red skin like me. I need some type of reassurance to help me get through this weekend. Not just for me but for my kids. Can anybody tell me whether or not the fact that these patches have come and gone about 3 to 4 times in the past 3 to 4 months as a good sign that it is not IBC? I have read that the redness can come and go, but I’ve also read that it is very fast acting and symptoms tend to worsen quickly. I am seeing roughly the same pink patch over and over - it’s definitely not getting worse and this started around January.

I would appreciate any responses at all as I am driving myself crazy and I really need to be more stable around my kids. Thank you so much in advance. God bless.

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  • kaynotrealname
    kaynotrealname Member Posts: 422
    edited April 2023
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    I know you're panicked and I'm so sorry. I haven't had IBC but everything I've read on it says "Unlike an infection, inflammatory breast cancer symptoms do not tend to come and go." So I would think that the red spots you're getting that keep going away are probably a pretty good sign it's something else. Plus the fact that it's really rare is in your favor, too.

    I'm also a little mad at your GP and wish medical doctors could be a little more sensitive. No wonder so many of us want to get rid of our breasts at first difficulty. There are so many other explanations for what you're experiencing and almost every one of them is benign. Yes, it's good to get it checked out but all he had to say is he thinks it's wise to do a mammogram and ultrasound just because it's breasts changes and you can never be too careful. He didn't have to throw out a possible diagnosis, one of which isn't even very likely. So all that to say that I feel your panic, we all do, and it sucks. I wish I could say something to make it go away but I can remind you of some facts. IBC is super rare but is still very treatable and benign breast changes are not super rare. In fact most every women gets them at some point in her life. So just try to hold on until they check you out and we'll be here in the meantime.


  • lw422
    lw422 Member Posts: 1,409
    edited April 2023
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    Manda--I was diagnosed with IBC a little over 2 years ago. I had a pink "bruise" on top of my breast about the size of a quarter. It did not "come and go." It also didn't get any worse and I had very few IBC symptoms, and my breast didn't look anything like the horror pictures you'll find on the internet. It just looked like my other breast but with a pink bruise. I knew something was going on when the "bruise" didn't change color like a normal bruise and didn't go away. My PCP thought I should have it checked and ordered a mammogram w/tomo and an ultrasound. I made a beeline for MD Anderson.

    The ultrasound showed a swollen lymph node so I also had a needle biopsy and the diagnosis was confirmed. A subsequent MRI showed a patch of thickened skin but it was not obvious to the untrained eye (me). It seemed that my breast got more tender and the nipple was extremely sensitive, but I never knew whether that was the IBC or just all the poking, prodding, mammogram, needle biopsy, etc. (I also could not stop "feeling" of the breast.)

    Anyway, in my experience the symptoms of IBC do not come and go. Your doctor may not have been the most diplomatic but I must applaud him for getting you in to be checked ASAP. Many (most?) doctors want to fool around with antibiotics and assume that the issue is mastitis or something when time is of the essence with IBC. IBC is rare, so I suspect that you don't have it. But if you do, you will be grateful that your doctor didn't hesitate to get the ball rolling.

    Try to find something fun to do this weekend. I know the waiting is hard. My very best wishes to you.

  • mightymanda
    mightymanda Member Posts: 2
    edited April 2023
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    Thank you all so much for your kind replies - just knowing I’m not alone makes me feel a lot better. Lw422, I think you were one of the people I read on this forum with “just a red spot” like me so I’m so glad you responded here. I just need to find something to hold on to that will give me hope/confidence that this is not IBC because I really feel like I meet the criteria (37, overweight, red patch) - I feel like almost anything I’ve read on it has confirmed my fears. Even knowing how super rare it is doesn’t help because I keep telling myself (someone has to get it, why not me?)

    So for now I’m just going to keep telling myself that it’s a good sign this redness comes and goes roughly about once a month (4 times in the last 4 months - didn’t make that connection - maybe it’s hormonal somehow?) and that I would really think if it was IBC I would be developing other symptoms by now since the redness started in January and IBC is so aggressive. If anyone can confirm that’s logical/realistic thinking and I’m not just fooling myself that would be great :)


    thank you all again - you are all wonderful beautiful people :)

  • lw422
    lw422 Member Posts: 1,409
    edited April 2023
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    Manda-- we all know exactly how you are feeling; the anxiety is horrible when we are waiting and filled with fear/dread. I wish I could reassure you about whether you'd be having more symptoms by now... except that each of us is different so it's impossible to say. Some of us IBCers had accelerated symptoms that got much worse very quickly. I was not one of those, thank goodness, and my treatment was started within 5 weeks after I first noticed the pink spot. I'm sure you've read plenty of posts in the IBC section (which is exactly what I did 2 years ago), so you know that we all had "similar but different" experiences. The sad fact is that you will only be reassured after having the scans done.

    I am old enough to be your mother so I focused on the statistic that IBC typically happens to younger women. Unfortunately stats are just numbers, not people. Hang in there and try to distract yourself; I know it's hard. We will all be here, waiting to hear your scan results. Big hugs.