Worrying over nothing?

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OhDearDear
OhDearDear Member Posts: 4
edited May 2020 in Not Diagnosed But Worried

I've had a red itchy rash branching out from the nipple on both for a few months now. No nursing or pregnancy. Steroid cream and antifungal cream/pills didnt help. I've also had chronic pain in my breasts for a good 6 months now also stemming from the nipples. 99% sure it's probably just some skin issue. But I would like a MRI just to rule out IBC. But i know doctor's are very strict with ordering MRIs because they're so expensive.

I just had my new patient appointment with a new PCP (moved recently). She ordered a mammogram and an ultrasound stating that breast cancer doesn't cause pain but because of my family history i need a baseline for mammograms due to fibrous breast tissue. . My grandma had breast cancer in her 50s.

If the imaging comes back normal should i just let it go? Or should i push for an MRI? I just don't wanna end up regretting not pushing for one and 6 months later I end up stage 4. But i also know IBC is extremely rare especially in BOTH breasts so I might be overreacting. Thanks for the advice.

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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2020

    You have an itchy rash that is not going away. No, you should not let it go. You should get a diagnosis and get the rash resolved.

    IBC usually progresses quickly and rarely is in both breasts. So even though the steroid and anti-fungal creams haven't worked, this still is sounding like it could be a skin condition. What has the dermatologist said, given that the creams have not resolved the rash?

    If you have extremely dense breast tissue, requesting an MRI makes sense. Whether or not you get the MRI, another option is to request a punch biopsy, which is used to diagnose skin conditions, and is also used to diagnose IBC. The dermatologist can do this.

    Good luck and please let us know what happens


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  • AngelEra
    AngelEra Member Posts: 3
    edited May 2020

    Please let us know what happens, having the same issue. Had a mammogram and ultrasound that were negative for suspicious findings in the area of the breast, but still worried.

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  • Jons_girl
    Jons_girl Member Posts: 696
    edited May 2020

    Keep us posted. Yes push for mri.

    This website tells all kinds of stories of dense breast tissue women who’s cancer was missed by mammos. They do not work for all of us. Yes work great for many. But I’m one of the 40% who they don’t work well for dx cancer in my breast tissue. My gma has breast cancer too.

    www.areyoudense.org

    Blessings! Hope you get your results soon. We are here for you. Hugs.

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  • OhDearDear
    OhDearDear Member Posts: 4
    edited May 2020

    Hi all!

    Yup. Mammogram and ultrasound came back as negative and me having dense breast.

    The rash was gone for a week again and is now back. I've changed soaps, lotions, I dont know whats going on with it.

    Dermatologist did a punch biopsy and the results were either photodermatitis, early stage of vitiligo, or cutaneous lupus. She also gave me a stronger cream, hydrocortisone. But I'm tired of the itching and the pain/inflammation.

    I think with the punch biopsy being negative, my doctor won't give me an mri, but it cant hurt to try! Thank you all for the advice, and Jon's_Girl, I will check that site out today.


    I'll keep you all updated!

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  • OhDearDear
    OhDearDear Member Posts: 4
    edited May 2020

    oh to add.

    I had to REALLY fight to get a mammogram. Because of my age, they wouldn't give me one at first. I had to explain that my doctor wants an initial look at my breast. I want it for future reference. My grandmother had breast cancer and that I wanted to make sure. Jeez louise they acted like THEY were gonna pay for it!

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  • Jons_girl
    Jons_girl Member Posts: 696
    edited May 2020

    I'm glad all is well! Thanks for the update. Yes we definitely have to advocate for ourselves. Good job for advocating for yourself!

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited May 2020

    If you've been told you don't have IBC, why would you need an MRI? You've had a mammogram, ultrasound, and punch biopsy, all with negative results. You should be celebrating at this point.

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  • OhDearDear
    OhDearDear Member Posts: 4
    edited May 2020

    Why get an MRI: Because my problem with my breasts still hasnt gone away yet? And I'm not going to spend the rest of my reproductive years or more walking around in constant pain, itching, and having a big red rash. And my punch biopsy wasn't negative, it was inconclusive.

    I've been through something similar before. I was diagnosed multiple times since I was 2 with iron deficiency anemia. Been on and off iron pills with no sucess and left with constipation. And when i finally pushed for them to dig deeper and to compare my iron levels and blood tests, they realized I didn't have iron deficiency anemia. In fact, I had a genetic blood disorder. It took 27 years for that to happen. I REFUSE to go through that again.


    Eta: but yes regarding not having IBC I am happy. But that doesn't mean my journey is over.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2020

    But an MRI is not a skin diagnostic tool. Did the dermatologist make a follow up appointment to recheck you after you use the prescribed medication

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  • Beesie
    Beesie Member Posts: 12,240
    edited May 2020

    I think Alice's point is that nothing is pointing to this being IBC or a breast condition.

    As you mentioned yourself, your symptoms (both breasts, redness comes and goes) are not consistent with IBC. Your mammogram and ultrasound were clear. Your punch biopsy was inconclusive, with the 3 possibilities all being skin conditions (although the lupus can be a systemic condition).

    So it's not that you shouldn't be digging deeper to find out what this is, but that you should be looking where the tests are pointing you, where you are more likely to find an answer more quickly. The results are all pointing you to the right, but you are still looking to the left.

    I found the "cutaneous lupus" possibility to be interesting, so I did a search. I came up with something called "lupus mastitis", which is a rare condition that can mimic IBC. Not saying that this is the answer (probably not since it's pretty rare) but it seems like a logical direction to go given your punch biopsy result.

    Or maybe another punch biopsy from a different area to see if the results more definitive?

    I hope you are able to get to the bottom of this, and find some relief.

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