IBC? Confused by what tests to have!

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EClaire
EClaire Member Posts: 45
edited June 2014 in IBC (Inflammatory Breast Cancer)

The Saturday after Thanksgiving, I woke up with a pink area about the size of a half dollar (only more oval) on my right breast. It's the breast that I had lumpectomy and mammosite radiation on in January of this year, though the pink spot is on the opposite side of the nipple from the surgical incision. The next day, my temp was 99.5, and I felt a little achy and tired, but since I'm taking an AI and recovering from parathyroid surgery (Sept), I'm not sure whether that means anything.

I should also mention that I had a pink area that looked kind of like this at the incision site two weeks after surgery and again 2-3 months after surgery. I took antibiotics both times and both times the pink cleared.  

So, on Monday, I went to my radiation oncologist. My temp. in the office was 100.2, but that was with an ear thermometer, which I've heard aren't all that accurate. I didn't feel achy that day and haven't since, nor has my temp. been above normal since. He didn't think the pink area looked like it was from infection or radiation, but he put me on antibiotics and said if it doesn't clear, he will order a mammogram and ultrasound.

I only have one day of antibiotics left, and the area has not gotten better or worse. It's smooth, not warm, not itchy, and not a bright pink. The only other thing I've noticed is when I lean down while getting dressed, a 1/2-inch linear dimple appears about a 1/4 inch above the incision where the mammosite catheter was placed. I noticed this a couple of weeks ago and figured it was related to the cavity left by the mammosite. They took out a pretty good-sized chunk to accommodate the mammosite balloon, and there is a seroma in the cavity. But since I found the pink area on my breast, now I am not as confident the dimple is related to mammosite. 

I go back to the rad. onc. next week, and I want to make sure I know what tests he should be ordering. I've read a mammogram rarely shows IBC and that ultrasound isn't much better. It sounds like if he orders a biopsy, it should be a punch biopsy, but I've read that can miss IBC, too. And I've read that MRI is the best imaging to do, but I've also read MRI can miss it. I'm so confused! 

Any thoughts on whether this could be IBC and what tests I should push for to find out for sure?

Thanks so much! 

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Comments

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

    If things get worse in the next 2 weeks and you develop more symptoms, you may want to have a biopsy where the skin is irritated.  I'm not a doctor, but I do have ibc and had a large amount of swelling, itching red breast with bug bite look.  I was also warmer on the infected side, but I did not have a fever.  I had to wait 3 weeks before being seen by surgeon who biopsied me.  I later had many more tests to confirm exact diagnosis like MRI, brain MRI, Pet scan on top of mammo & ultrasound.

    Hope it clears up soon and  get the biopsy if it does not get better.

    Terri

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  • pinker
    pinker Member Posts: 23
    edited December 2011

    IBC is a clinical determination and based on observations, not a test. I just recently found this out. My doc was driving me crazy flipping between lobular or IBC, but she sent me to a specialist (top guy at Tufts hospital in Boston) and he said based on history and observations I def have IBC.

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  • ma111
    ma111 Member Posts: 1,376
    edited December 2011

    Mine was confirmed with skin punch bx. The breast were also red swollem, warm and itchy. Did he say it could be radiation dermitis?

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  • EClaire
    EClaire Member Posts: 45
    edited December 2011

    Thank you all so much for your responses. Ma11, he said he doesn't think it is from radiation because it is not widespread, but he didn't completely rule it out. I don't know what to think.

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  • ma111
    ma111 Member Posts: 1,376
    edited December 2011

    A simple skin punch bx that can be done in the office could tell what it is. I hate when they don't figure things out and leave us hanging. A family doctor or dermatologists can also do a skin punch in the office.

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  • EClaire
    EClaire Member Posts: 45
    edited December 2011

    Thanks, ma111. Great info--I'm glad to have as much information as possible, since I have the impression a lot of doctors haven't even seen IBC, so they may not be that up to speed on figuring this out.

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  • ma111
    ma111 Member Posts: 1,376
    edited December 2011

    So many doctors haven't seen it that I volunteered with my family doctor, who teaches to show medical students. A doctor in family practice sees it once in his/her career. She took me up on it and show it to about 10 medical students and other attending doctor and the director doc. Maybe they will be able to catch someone's early.

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  • EClaire
    EClaire Member Posts: 45
    edited December 2011

    That's really cool that you did that. 

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