Convinced I have Pagets

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Ssl9281
Ssl9281 Member Posts: 44
edited November 2018 in Not Diagnosed But Worried

I am 37 years old and for the past 5 months my left nipple peels/flakes on & off during the course of each month. There is no redness present but the center of my nipple is cracked and looks like it is wearing away a bit. It is very subtle but I can see it. This nipple has also changed shape which my gyn told me back in April was due to an enlarged Montgomery tubercle. I’ve tried all sorts of creams to help the peeling but it keeps coming back. It will peel for 1-2 days, go back to normal, then just look dry. This happens at least twice a month. I mentioned this to my gyn in August & she said she didn’t know what would cause it. Also, the gyn just checked my breasts 2 weeks ago & felt no masses or didn’t notice the nipple (I didn’t point it out). This breast had a diagnostic mammo 1 year ago that was negative. I’m quite worried and don’t know where to start. It’s subtle, but my nipples look different and I’m scared. Do I go back to the gyn or straight to a dermatologist? Is there always redness with pagets?
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  • djmammo
    djmammo Member Posts: 2,939
    edited November 2018

    Ssl9281

    The results of a mammogram a year ago is not reassuring if the symptoms began well after that. Has any one recommended mammo or US for this?

    IMO a dermatologist is best at diagnosing diseases that first present as skin problems and this may be your best bet for a diagnosis. In my experience it takes a while to get in to see one. I would ask the GYN if they want you to have any imaging while you are waiting to see a dermatologist.

    Has anyone remarked on the duration of your symptoms as being typical or not typical for Paget's ?

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  • Ssl9281
    Ssl9281 Member Posts: 44
    edited November 2018
    I’ve only mentioned this to my gyn & she has not seen it actively peeling. When I mentioned it in August she said she might have me follow up with a dermatologist but neither of us has brought it up again. The issue is it looks relatively normal unless you’re really looking at it. I’ve been brushing it off so I didn’t mention it again when I saw the gyn recently & she didn’t notice it either. I want to get it checked now for peace of mind, just to know why it’s happening but I don’t know if I should start with the gyn again or straight to the dermatologist. Also, I’m worried I won’t get a biopsy from anyone, since it is really hard to notice.
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  • djmammo
    djmammo Member Posts: 2,939
    edited November 2018

    Ssl9281

    If your GYN is not concerned about it, see a dermatologist next, your GYN may have to give you a referral depending upon your insurance. If you have a PPO type health ins you can probably make the appointment yourself. Tell them your concern when you make the appointment so that they may try to fit you in earlier.

    Speaking for myself, a radiologist will not usually biopsy something that cannot be seen on imaging, but a dermatologist is quite adept at skin biopsies which is usually how the dx of Paget's is made.

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  • Ssl9281
    Ssl9281 Member Posts: 44
    edited November 2018
    Given the rarity of pagets, my age, and subtle presentation, do you think I should be overly concerned? This has me really worried yet on the other hand it doesn’t look that bad..
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