Somewhat worried about IBC.

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Cnebae48
Cnebae48 Member Posts: 11
edited June 2014 in IBC (Inflammatory Breast Cancer)

Is there anyone that I can talk to about IBC?

I am 19 and I felt a lump in my breast and the doctor felt it too, but when I went to go get an ultrasound done today it wasn't anything there they said. They said my breast is super dense now, I don't know why. Nothing like this has ever happened to me. My breasts are sore to the touch all around it. My chest above my left breast hurts when I touch it. I had swollen lymph nodes in both of my armpits about 2 weeks ago, but I wasn't sick or anything and they don't know where it came from. I have heard about mastitis and cellulitis and they gave me antibiotics for cellulitis. Are they treated with the same antibiotic? If so then, that can't be what's wrong. My left breast sort of looks different from the right one, it's bigger and heavier and the nipple is bigger and there is a bit of bruising around it. I did some research and the only thing that I came back to was inflammatory BC which affects young african american women such as myself (and everyone else). I know that you can have a cancer without lumps, however, I just want to know what's going on so that I can get treat or get some kind of medicine prescribed to stop the pain. I can't go everyday with my breast like this, it swollen and it hurts really bad. What are some of your stories or thoughts? And also can you give me an examples of "sheets" and "nests?" Like what can you compare it too. I felt more than one lump I just don't know how to describe it. BC strikes at any age. There are girls younger than me with it. My body feels way different. I just want to know what is going on. I am in the military and I went to the doc last week and they just ignored it without doing any tests and told me that I was too young, but then i went back to another lady and she put in a referral for me to see a Surgeon off base so hopefully within the next one I will be seen. Thank you all for you input and answers.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited October 2011

    I'm glad you got the referral to a surgeon off base.  IBC is aggressive and only a biopsy will confirm.  Most cases do not present with a tumor; bit I also had a 3.5cm tumor with ibc which was confirmed with biopsy.  Best wishes on your results.

    Terri

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited October 2011

    Cnebae48,

    Biopsy is not the only way to confirm IBC.  Many times skin punch biopsies throw false negatives.  IBC is usually a clinical diagnosis, meaning that the doctor diagnoses it based off your symptoms and can confirm it with scans.  The best scan for picking up IBC is a PET.  Here is a pic of my PET at dx. The top left and top middle pic clearly show the skin involvement, I also had a large IDC tumor as well at the bottom of my breast in the 6 o'clock position.  It's a large photo so I'll just post a link to it here.

    Good luck to you.  I hope that you can get some answers soon! 

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  • Cnebae48
    Cnebae48 Member Posts: 11
    edited October 2011

    Thank you. I will ask if they can do that also whenever I go to my appointment. I found these little bumps in a cluster and a few leading off under my left breast and a little lower and between both breasts. It's like a rash. That was not there two days ago.

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  • Laura_Jean
    Laura_Jean Member Posts: 48
    edited October 2011

    Yes, you need to get it checked out. Antibiotics will not be effective for IBC even though you may see some temporary reduction in the swelling (I did). They will need to do a punch biopsy as well as an MRI; MRI can show skin changes. Mammogram may not pick up (mine did not) especially if your breasts are dense. Also, there may not be a tumor present in IBC.

    Wishing you the best results as you go through testing. 

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  • SeanE
    SeanE Member Posts: 107
    edited October 2011

    Also check for inverted nipple and skin thickening - classic signs of IBC. And the previous poster is correct - IBC is really more of a clinical diagnosis (meaning there is no specific "IBC" cancer cell, just go off symptoms rather than chemistry).  If you have most of the signs, and they can confirm some sort of cancer through scans or biopsy, it's IBC.

    You are also correct in that being an African-American female you are at higher risk for this particular kind of cancer.

    Don't take no for an answer - get a second opinion from someone who knows IBC.  There's only 2 or 3 IBC clinics in the country (specializing in IBC breast cancer), but the Mayo Clinic would also be a good place to get it checked out.

    Hope it's NOT IBC, but if it is, get the best care possible at Fox Chase or MD Anderson.

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  • Cnebae48
    Cnebae48 Member Posts: 11
    edited October 2011

    @Laura_Jean How long did your lymph nodes stay temporaily unswollen?

    @SeanE My nipple was inverted for a couple of days. I mess with it a lot now so it's not really inverted as much as it was. My left breast feels much thicker than my right one. When the Ultrasound tech was pressing down on it, he said it was really dense and it hurted soooo bad. He never checked my right breast to see if it was both of them or not...smh.

    I got these little rash bumps right below my left breast that just came like yesterday and they are so itchy and I was just scratching my neck and have 2 bumps on the left side of my neck (the breast i am concerned about is the left also.) I got my referral put in from the base and I am waiting for the nurse to call me back tomorrow and schedule me an app. Hopefully, the docs won't turn me down. I got turned down on base by one of my pcms because they told me that I was worrying too much and that I was young to have cancer and that whatever it is will go away in a couple of days. I'm sorry, but military docs suck. But I will keep everyone updated on what is going on with me. Thanks a lot for all the help.

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  • Claudia413
    Claudia413 Member Posts: 114
    edited October 2011

    Sounds to me like the doctors on base need some educating. You are never too young or too old for cancer. I hope the off base doctor will "rule out IBC". If you have a printer, you can print out a brochure about IBC on the Inflammatory Breast Cancer Foundation website (www.eraseibc.com) and give it to your doctor. They need to read up on IBC. Let us know when your appointment is with the new doc. One thing you can tell a doctor is that if you're not pregnant, not breastfeeding and not running a temperature, you don't have an infection and should have IBC ruled out since it's highly aggressive. Let's pass around some education...

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