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Paget's or something else

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About this time last year I was having pain in my left nipple. I Googled it and it said incorrect bra size can cause that. So I changed bras. The pain has come and gone over time but it got much more intense a couple months ago. Then I noticed a hard spot on the tip of my nipple. I put Aquaphor on it and it softened the area but I was still in a lot of pain. Then I tried lotramin twice a day for a week. That helped it to feel less painful. But I have a small lesion right on the tip still. It does not bleed, no discharge but it's sensitive if I touch it. I also have a couple very small bubbles so to speak growing on my nipple. They are lighter than my nipple color, almost white and they hurt if I rub them.

I went to my GP a few days ago but saw the PA. She didn't seem very knowledgeable but she did observe the lesion and bubbles. She is sending me for a diagnostic mammogram and US. I had an abnormal mammogram a few years ago but biopsy confirmed benign fibroadenomas. I haven't had a mammogram since.

I feel like everything I read points to Paget's. I feel like what else could it be. I'm 45 so maybe it could be hormonal changes. But that seems strange to have hormones cause a sore on your nipple. It's just one nipple. I've never had eczema before and it's not flaky. I've read that eczema usually affects both breasts and usually affects the areola vs the nipple.

I guess I'm just posting on here to talk about it. I don't want to talk my friend or family yet because I didn't have any answers yet. I'm scared but also at peace if that makes sense. I'm going to make an appointment with a dermatologist too just in case. I'm going to push for a biopsy ASAP. But my PA wouldn't order it until I've had the mammogram and ultrasound. Thanks for listening.

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  • moderators
    moderators Posts: 8,287
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    Hello, @cmre00, and welcome to BC.org!

    We're sorry to hear about the pain and uncertainty you're feeling, but it's good that you're seeking medical advice and pushing for answers. Hope other members chime in soon with their own experiences and support. In the meantime and for more information on Paget's disease, you might find this article from our main site helpful: Paget disease of the breast symptoms

    Good luck with the mammogram and US, please, come back to let us know how it goes!

    The Mods

  • cmre00
    cmre00 Member Posts: 6
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    There was a cancellation so I was able to get in for a mammogram and ultrasound today. The radiologist never spoke to me but the tech said that he did not see any masses or areas of concern and he was going to put in his report that I need to see a dermatologist. I do have a derm appointment already scheduled for in a couple months. I'll be calling to see if I can get in earlier but at least I have that appointment for now and at least they don't see any masses in my breasts. But now more waiting and pain in the meantime.

  • moderators
    moderators Posts: 8,287
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    @cmre00, that must have been a relief to hear. Hopefully you can get an earlier appointment to see a dermatologist. Perhaps if you look for other dermatologists that are in-network with your insurance, you might be able to find something earlier for peace of mind? It can be so stressful, and the pain sounds unpleasant to manage. Or perhaps if you are able to book something sooner with your PCP, they can take a look at it and maybe provide a referral that might expedite things?

  • cmre00
    cmre00 Member Posts: 6
    edited July 10
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    I was able to see a dermatologist today. I also have an appointment next week with a breast specialist (surgical oncologist) that my PCP referred me to. The dermatologist said it might be as simple as eczema but she said it definitely needed a biopsy. She asked if I ever had eczema or any other skin conditions in the past (I haven't). And whether there has been any irritation on the areola too (there hasn't).

    I knew I would push for a biopsy if she tried to say one wasn't needed but there was a part of me that hoped she would say she was certain it couldn't be Paget's or it is definitely something else. But she never said that. I'm glad I didn't have to push for the biopsy but I'm scared because she seemed concerned.

    I should have results back in a week she said.

  • aborayis
    aborayis Member Posts: 387
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    Sending you some love and care as you await your results. Please let us know what happens. Hoping for good news. I’m sorry you are going through the anxiety and physical pain.

  • cmre00
    cmre00 Member Posts: 6
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    Thank you @aborayis. I don't have results back yet but I did get an indication that it's not good news. My tissue samples were sent to another lab and the tests that were ordered are ER, PR, Her2, Ki-67, P40, and CD117. Googling has told me these are secondary test used to determine the type of cancer. I'm not sure how long those tests will take to be received but I'm hoping they will be done in time for my appointment with the breast specialist on Thursday. This is a long, agonizing process.

  • cmre00
    cmre00 Member Posts: 6
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    Today I received the dreaded cancer confirmation. The pathologist did not feel that it is Paget's but the oncologist said she's not convinced that it's not. Either way it is cancer. Unfortunately.

  • aborayis
    aborayis Member Posts: 387
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    @cmre00 I’m so sorry. Absolutely no one wants to hear that dreaded news. Please know that you will have lots of love and support here from me and others here as you go through this journey. The part where you are now is very overwhelming. I found this helpful to say to myself and really truthful about what it’s like: “When you’re going through hell, keep going”. Just keep going. There is a lot to learn, understand, and make decisions about. The overwhelm will get better and as terrible as this is, there is much to be hopeful about these days. I’m an example. The cancer I had (yes, had past tense) used to be a death sentence but treatment has come very far and become much more effective. Ask any and all questions here. Rant and rage if you need. Share as much or as little as you want. It’s all welcome here. And most importantly, know you can do this.

  • cmre00
    cmre00 Member Posts: 6
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    @aborayis Thank you so much. I'm so scared. Every single ache or pain in my body right now I'm terrified is a sign that it's so all over. It's definitely overwhelming just trying to learn without freaking myself out. I don't what to go into this ignorant but I also know that Dr. Google is not my friend. I'm trying to learn from the boards instead. But even that can be scary. Thank you for the encouragement. I'm Glad to hear that treatment is going well for you. I'm trying to look at success stories to boost my mood and alleviate my fears. My MIL died of breast cancer 25 years ago so it's extra sensitive for my husband and kids right now. We just keep reminding each other that treatment has come a long way since then! Thank you again for the support!