Could it be Paget's Disease?!

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Wiggles
Wiggles Member Posts: 5
edited March 2018 in Not Diagnosed But Worried

Hi everyone

I'm new here and wonder if anyone can tell me how likely it is to have Paget's Disease of the nipple in both breasts please?

I've had what I thought was some kind of skin infection for 3 months now and it just seems to get worse and worse no matter the treatment I'm given.

I had a swab to test for thrush 2 months ago which was negative for thrush but positive for a staph infection which was treated with antibiotics. Last week I had another swab done, the results of which were normal, but my nipple and areola are still inflamed, scaly, weeping and bleeding on both breasts. So far I've been given flucloxacillin, fluconazole, clotrimazole, miconazole, chlorexidine and clarithromycin. I've used lanolin, multi-mam balm and compresses. I stopped breastfeeding 2 weeks ago against my intention to let my little boy self-wean. All this and it's STILL not gone! There's some slight improvement, but I think that's only because I'm not feeding so the layers of skin aren't being removed like they were as my skin was literally peeling off in my baby's mouth, but I'm losing my mind because I itch from head to toe and in the last week a rash has developed on my breasts, chest, arms and face which seems to be spreading. I don't even know if that's related to the "infection" or a side effect of the medication. If I could tear my skin off and crawl out of it I would!

I'm here because my GP said he doesn't know what else to try as he's prescribed everything he can and I've done everything right. He made a referral to the breast surgeon a week ago but I've heard nothing yet so called the Dr surgery to ask about timescales. I was given the name and number of the surgeon so I could contact him directly for information but when I looked him up online to check I had the right name I discovered he's a breast cancer specialist. I Googled (I know - bad idea!) the symptoms of breast cancer to prove to myself I don't have it and don't need to be worried, but was surprised to find a description of Paget's Disease and a load of photos that look just like me! I've been constantly calling the breast clinic all day but can't get through to anyone. The only thing that's giving me a shred of peace of mind is that I read it usually only happens in one breast and my problem is in both plus I don't feel any lumps or anything like that. I can't help but worry though as I have all the symptoms listed and every medication given to treat me has failed.

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited March 2017

    Wiggles, So sorry you're going through this anxiety with breast health. Do you think your GP's nurse could help you get the specialist's nurse or scheduler in contact with you. The waiting and not knowing (besides itching) is the worst. It could be nothing, and the bs could refer you to a dermatologist. But getting an answer quickly would be more helpful as you are in significant discomfort and have been working with your doctor for some time on this. I'm sorry I couldn't be of more help. Hopefully someone else will come along shortly who may offer some additional ideas or support. ((hugs))

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  • Wiggles
    Wiggles Member Posts: 5
    edited March 2017

    Thank you so much for your reply. I finally got through to the breast clinic and am now waiting for confirmation of an appointment on Monday afternoon, so hopefully I won't be waiting much longer. I just hope he's able to do the right tests to diagnose and treat whatever this is quickly. I can't believe how worried I am about this though. I'm usually a very positive, 'glass half full', 'find the silver lining' type person but the shock of knowing this is even a possibility has completely floored me. Maybe I'm just over sensitive at the moment because my boss is very seriously ill with cancer right now. I don't know. Time will tell!

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited March 2017

    Having a (recently weaned) baby AND a boss seriously ill with cancer are enough to explain your intense worry, not to mention having this awfully uncomfortable rash on your breasts. So glad you got in to a breast clinic on Monday. They will absolutely be able to do the right tests to diagnose a breast problem. Try to distract yourself with your lovely baby through the weekend and let us know how else we can help you. ((hugs))

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  • Wiggles
    Wiggles Member Posts: 5
    edited March 2017

    Thank you! My little one and his 2 year old brother will most definitely keep me distracted over the weekend with their mischievous antics. Haha. The little one was distraught last night signing to ask for milk and patting my chest saying "that, that!". I feel so bad having to say no and seeing his little face crumble. I had to leave him with his dad and walk away to get him to calm down, but it's just too painful to feed him and not knowing what it is yet I'm terrified of him catching something from me.

    I just spoke to my GP and he said that because whatever this is is present in both breasts it's definitely NOT Paget's Disease as that only occurs in one breast. Is that right? Has anyone here had it in both?

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  • Icietla
    Icietla Member Posts: 1,265
    edited March 2017

    Not necessarily.


    [Quote] Between 1 and 4% of all breast cancers are Paget's diseases [1]. Bilateral synchronous tumors occur in about 1% of all breast cancers [2]. So far there are less than 10 reported women with synchronous bilateral PD. The age of these patients ranges from 45 to 74 years [3, 4]. This phenomenon has been described twice in men [5, 6].

    Source: https://www.hindawi.com/journals/cridm/2014/152836/

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  • Wiggles
    Wiggles Member Posts: 5
    edited March 2017

    Ok, thank you. So it's possible, but even less likely. I'm only 34 as well so my age and the fact that it's in both breasts means statistically it's really not likely to be Paget's. I would normally be the type to take comfort from the odds and not panic etc (I'm forever telling people not to Google and this is why - even though I did it to prove I was fine I've still ended up freaking out over something that realistically is not likely to be happening) but I just can't seem to shake the feeling that this must be the answer. There must be hundred of conditions it could be that have similar symptoms though and the medical evidence is on my side, so I need to get a grip and just wait and see what the breast specialist says on Monday.

    Thank you both for taking the time to answer my questions - I feel like such a fraud for joining now that I've calmed down a bit when there are people going through genuinely awful situations and I've probably just got an itchy skin condition.

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  • Lotusconnie
    Lotusconnie Member Posts: 101
    edited March 2017

    It is very rare. Good luck with everything!

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  • Wiggles
    Wiggles Member Posts: 5
    edited March 2017

    Thank you!

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited March 2017

    Wiggles, don't feel bad for coming to a place where you could feel safe and get support and seek other women's experience when you needed it. Hopefully Icietla's statistics will help you fell a bit calmer as you wait this weekend. And while the experience of not being able to nurse your sweet baby is painful, can you do some extra snuggling and comforting (for you both)? Nursing is such a bonding experience, but it surely isn't the only one. Let your husband feed him, but find another way to soothe each other. Sending you thoughts of peace and healing ((hugs))

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  • Audora143
    Audora143 Member Posts: 1
    edited March 2018

    did you ever figure out what was wrong

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