Worried Husband - Hoping wife does not have IBC

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mattman
mattman Member Posts: 4
edited August 2021 in Not Diagnosed But Worried

Hello All,

Late June, my wife got the red bug bit looking rash on her left breast. Throughout July and early August, she has experience itchiness and pain in the breast. It even gave her some pain in the arm at one point.

We had a CT, mammogram and ultrasound at Parkview (Indiana) that were clear. We then flew from Indiana to MD Anderson (Houston,TX) for a second opinion. They gave her a mammogram, ultrasound, and MRI that they stated were clear. They also accepted our request of a skin punch biopsy. The dermatologist said he didn't find anything malignant. We had them punch it in the red area. The MRI tech said was some skin thickening in the MRI but were not concerned. He said this was normal for eczema if I recall right.

The dermatologist, from MD Anderson, said he has seen IBC before and didn't think it was IBC. He prescribed a steroid cream. It does seem to be helping on the itch and making the red spot fade to very light red. If it was IBC, would steroid cream help? I am just curious as this may give me some hope it is not IBC.

Thank you all,

Matt

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    Hi Matt,

    Your wife has had imaging and a punch biopsy as well as consultations with two doctors. Both confirmed it was not IBC. The punch biopsy confirmed it was not IBC and as you know, IBC is rare. I think you can feel very comfortable that it is not IBC. Take care.

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited August 2021

    Hi Matt, CT, Mammogram, Ultrasound, MRI, skin punch biopsy that are all clear is all the hope you need. It doesn't get much better than that.

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  • mattman
    mattman Member Posts: 4
    edited August 2021

    Thank you all. I've just read that it is missed and misdiagnosed often. Through research, I've seen that these things can come up clear and biopsies can miss finding it. My anxiety is so high. I do very much appreciate your comments. I'll try to stay relaxed.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    matt,

    A punch biopsy is the gold standard for diagnosing IBC. Don’t borrow trouble! We also have a caregivers/family members section that might be helpful. We are breast cancer patients but not all of us have been family members of those worrying about bc.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited August 2021

    What everyone else said, your wife has been double tested at two different facilities and she is in the clear.

    "We had a CT, mammogram and ultrasound..." No. SHE had those tests, not you. Please don't.

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  • LW422
    LW422 Member Posts: 1,312
    edited August 2021

    Matt--if you were at MDA Houston, did you see the doctors at the IBC clinic? Just as an FYI, I have IBC but two punch biopsies were "negative for carcinoma." Skin punch biopsies are not the standard for IBC diagnosis; the diagnosis is clinical. If I were you, I'd be satisfied that the doctors made the correct diagnosis for your wife, especially if she is seeing improvement with the medication.

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  • mattman
    mattman Member Posts: 4
    edited August 2021

    Hi LW422,

    Thank you for your input and view. Very much appreciated. Sounds like I should throttle down on the anxiety.

    She seen the NP at the undiagnosed Breast Center. I was also in the room. The NP said she personally didn't think it was IBC. She went the extra mile though and got her into their dermatologist that day and an MRI days later. The dermatologist didn't think it was IBC either but did take the punch biopsy. She got the results in 7 days later which I thought was great.

    At Parkview, my wife only seen the radiologist that did the ultrasound and mammograms.

    She's scheduled to see a dermatologist in Indiana later this month for further evaluation. There has to be a reason she has these symptoms so it would be nice to find out what it is. That's my wife's words, not mine. Although I do agree.

    Thank you again.

    Matt

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  • LW422
    LW422 Member Posts: 1,312
    edited August 2021

    Matt--I'm glad your wife is getting some good results from the medication. The NPs at the Undiagnosed Breast Clinic have the expertise to determine whether a patient needs a referral to the IBC clinic, so I'd feel confident in the NP's opinion.

    IBC symptoms typically get worse, and often, quickly. If your wife has any additional symptoms (swollen breast or inverted nipple), see a breast specialist ASAP. My very best wishes to you both.

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  • mattman
    mattman Member Posts: 4
    edited August 2021

    Thank you, LW422. She's keeping a very close eye on it.

    I'll be sure to post back in time as I believe it helps in the awareness for others.


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