Paget's Disease of the Breast
Comments
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Rachel is 19 years old and has health anxiety. Nothing puts her mind at rest, so don't encourage her to see more doctors.She has had multiple doctors visits and has been told there is not a thing wrong with her. She does not have Pagets or anything else and needs to stop obsessing about having breast cancer.
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Hi, I had Paget's of the Nipple, as well. I also had DCIS with IDC. I had a red scaly nipple that started to bleed. My other breast cancer had no lump, so the only indication I had Breast Cancer was from the bloody discharge. It is rare, Paget's apparently. My physician said he had never seen a case. Yet, didn't refer me to get any other testing done. I thought the blood was coming from the scaliness that I thought was peeling, cracking from it and thought it was just an irritation, so my physician didn't do anything about it. That is a whole nother story altogether, and is being investigated for negligence. I also don't think it's as rare as I've been told?
I had to have an left side mastectomy with chemo and Herceptin, as it being HER2 positive. So that took care of the nipple problem, as well.
And to Rachel. It is ok and even necessary to be proactive with your health. If you are having these symptoms insist on a biopsy. It is the "ONLY" sure diagnosis. Speculation is not "for sure". Statistics are general and not accurate for everyone. Good luck hon.
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Hi there,
In October of last year I started feeling an itching and burning sensation in my breasts. I was told to get an ultrasound by my PCP; it came back inconclusive as I have dense breast tissue, and I was ordered to get the mammogram.
This came back showing I had multiple cysts throughout both breasts and one complex cyst on my left breast.
In the meantime, my nipple on the left side is showing odd symptoms. It's much brighter red than my other nipple, and has flaky skin around it. The top of the nipple itself is thick, almost like a scab. There are a few white-ish dots that look like milk blebs.
I went back for my 6-month ultrasound in July and everything came back "normal" and "stable".
Is it possible for paget's to go undetected in the ultrasound, and is it possible this is what I have in the left nipple? If so, what are my next steps from here? I'm scared
In terms of risk factors, my mother did have breast cancer at about 55-60 yo. I'm a 35 yo white woman. I am about 40 lbs overweight and probably drink too much alcohol (though nothing crazy). Dense tissue. NO BRCA gene.
Thank you in advance.
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Hi Lindsay,
Sorry to hear about your worries, Paget's very seldom shows up on any thing other than a biopsy.
Although Paget's is rare I would still request a biopsy done if it was me.
Hope all goes well for you. And I personally don't feel weight or lifestyle has any thing to do with it, I'm slim never smoked only drink a little and was a half marathon runner so quite fit but unfortunately still diognosed with Paget's.
All the best and let us know how you get on.
Lou x
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Thank you! Sorry to hear.
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hello everyone! I am 33 mom of two girls. I am still nursing my 1 year old right now, and about three weeks ago, while night nursing, experiences some sharp pain. I just thought her teeth were rubbing again...and just rolled over. In the morning I examined my left nipple and on the underside was a red spot. I started to clean it with hydrogen peroxide and put bag balm on it. It did nothing but dry up, flake, ooze, and repeat. I went to my primary care... she said it didn’t look like cancer and she didn’t feel a lump, and it probably had something to do with nursing. Told me to use nystatin for ten days, if nothing happens make a follow up. Well it’s been almost three weeks, still waiting for my follow up (couldn’t get in until over a month later). I have made an apt with a different clinic that got me in a week earlier. Anyway, i am going to request a hole punch biopsy referral. My anxiety is through the roof! My chest hurts so bad since I have learned about Paget’s disease. My back hurts... I’m tired, irritated, and stressed! I had a meltdown the other night because my babies need me! My apt is on Wednesday the 12th at 11am. I am hoping they listen to my concerns and get me referred to a surgeon or dermatologist so I can get the diagnosis already and start working towards the road to recovery. As much as I am hoping and praying that it’s not Paget’s, I am pretty sure it is.
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Hi, I hope all goes well for you on the 12 th. Try not to stress too much,I know easier said than done!! It doesn't do you any good and hopefully your thoughts may be wrong.Pagets is very rare, at my hospital they had never seen it before.
All the best
Lou.
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Hello Lou,
Do You know if a dermatologist can do the punch biopsy? I’ve made a dermatologist apt to try and skip the PC referral process...0 -
Yes I believe so, definitely worth a try.
Regards Lou.
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had my biopsy today at the dermatologist. Should Find out in a weeks time on weather or not it is Paget’s. Thanks for your reply Lou!
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Anloha, that's good news.
Let us know how you get on. Fingers crossed for you.
Regards Lou x
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Hi All,
I just had a biopsy . Not sure results yet. My rash is on both breasts - have any of you had rash on both breasts ( vs 1 ) ?
Thank you !!!
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Hi Fiona,
Sorry you are having to go through the tests, it's usually only on 1 but they did check my other nipple when it also had a problem, thankfully it was ok. They told me it was possible but highly improbable.
Hope all goes well for you, let us know how you get on.
All the best
Lou.
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I only had rash on 1 as well I've not heard of it on both but both also checked out for me best of luck let us know
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Fiona14, routing for you that it's benign! Keep us posted.
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I posted on the not diagnosed but worried forum, but I wanted to see if anyone had similarities to what I'm going through on here..
A couple of years ago I had an IBC scare, and now I'm psyching myself out with a Pagets scare. I got pregnant in August and miscarried after 6 weeks, and now I believe I'm pregnant again, but won't know for another week or so. My husband feels like the crust/scab is due to pregnancy hormones but I disagree since it's only in one breast
I had the same scabbing a couple months ago, but no active discharge. My breasts have been starting to hurt and ache, but my left one has felt especially odd. I noticed a tiny scab on my nipple, kinda yellow in color and not on the other nipple. Of course I Dr. Googled it and now I'm afraid of Pagets. There's no extra redness or scaling of the skin, but I'm afraid of this crusting I found. Anyone deal with the same issue and have it not end up being Pagets? I felt for lumps, so did my husband and didn't feel anything. I have an appt soon, but don't know what to think in the meantime.
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I so wish I could tell you what it is. The worry is a beast for sure! I'm glad that you have an appointment soon. Do ask them to do a punch biopsy, so you can know for sure. Just remember that what you are mentioning can occur with many benign things-including and not limited to a fabric allergy, detergent change/allergy, etc. It is great that you know your body well and and that you pay attention to any changes. Stay away from Dr. Google, though we all do--I will think great thoughts for you---Take care!
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Went to my primary care physician this AM, and she did a breast exam and ordered an ultrasound. I asked her about Pagets and she shut it down immediately, because I’m not presenting skin changes-just the random crust/discharge twice that I had. I feel a bit relieved, but also cautious because I’ve read ultrasound & mammos won’t show anything. She suggested it could be just an infected duct or it just happened randomly. Fingers crossed for a smooth road ahead..just trying to figure out how to relax in the meantime :
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Hello everyone, I just found this blog. I was a high risk candidate both because of my family and gene mutation. I also had a scare in January when my breast MRI spotted something and I had to get a biopsy, fortunately it was benign. I opted to have a bilateral mastectomy and initially with nipple sparing. But a week before my surgery I changed my mind and told my surgeon to take it all, I don’t know call it fate. So this past August I had my surgery, low and behold I had Pagets Disease in both of my breast’s on the pathology report. I had never heard of it before an looking back I had some of the symptoms like bleeding nipples and crazy itching but that was about all when I went in for my breast checked it didn’t seem to concern the physician. My mastectomy turned out to be the treatment, I find out if I need radiation next week hopefully surgery is all that needs done. I hate to think what could happen had I not have the surgery. How many of y’all had radiation?
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hi Elijahgirl, in both breasts that is amazing thanks to your gut feeling that happened I think is true here. I had Paget's symptoms and thanks to my own instinct and my DRS being thorough I had nipple only removed well a fair chunk and because I kept my breast I had to have 20 sessions of radiation, I think though I may be wrong if you have a mastectomy it's no further treatment best of luck let us know how you go
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Elijahgirl - Almost a year ago I was diagnosed with DCIS and Pagets. I opted for BMX with direct to implant and didn't need anything further. Good for you for trusting your gut!
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OK, I just had my first mammogram, I am 40 years old. I had it on 11/15 and got a call on 11/16 wanting more tests on my right breast. I never said anything about my right breast and nipple itching a lot because I just figured it was dry skin and hormones. I find it very coincidental that they want to check that breast and nipple area. I go 11/21 for an ultrasound and I'm very nervous now and can't stop researching and thinking about it. Did anyone have results and symptoms like this and not have breast cancer??
CONCLUSION:
BI-RADS Category 0: Incomplete: Needs Additional Imaging Evaluation
FBREAST COMPOSITION: Heterogeneously dense, which may limit the sensitivity of mammography.INDINGS: Asymmetric densities in the right superior quadrant and right central breast. Additional imaging recommended. No suspicious findings in the left breast.
RECOMMENDATION:
ADDITIONAL MAMMOGRAPHIC VIEWS REQUIRED. RIGHT BREAST
ULTRASOUND RIGHT BREAST beginning here targeting the nipple and right superior quadrant
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Hi, Paget's doesn't usually show up on a mammogram or ultra sound, only usually diagnosed by biopsy. It usually is sore and you have a discharge, sometimes crusts over then looks better for a while then starts again.
Hope this helps, I hope yours is nothing to worry about, some times they call you back quickly as the picture is not clear enough.
Wishing you well
Lou.
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Hi. I was diagnosed as suspicious of being pagets I went with a rash on nipple it was mad itchy at times then would be fine no discharge ultrasound and mammograms were clear. Pagets only shows up on biopsy,the repeat biopsy took longer and showed pagets and DCIS unfortunately.hopefully yours isn't pagets and it's quiet rare let us know how you get on.
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Hi, I hope I'm posting this in the right place. I have posted here before, last December, and appreciated the input I got from you guys. I've been having issues with my right breast on the nipple for about 2 years now. I have had 4-5 incidences in the last two years where I get tingling in my right breast, followed by a blister that forms, the skin around the blister peels, turns black, and then bursts. Pus and blood always come out. The nipple is always itchy and burning throughout this process. My OBGYN originally wanted to rule out Pagets, but mammo and ultrasound clear each time (which I know from reading some of your posts is typical). I've had it burst and then heal up (not entirely heal up, but mostly) 4-5 times now, but a breast surgeon has only checked it out twice. My OBGYN has sent me to two different breast surgeons each time I have sought treatment. Neither would biopsy the site because neither think it's Pagets. They both thought it was an infection. I would tend to think so too, but it keeps coming back. One wrote a prescription for an antibiotic, but it had already mostly resolved so I didn't take it. The other one cut it with a scalpel and drained it. I'm currently having it again, which is why I'm writing this post. My question is, have any of you with Pagets experienced pus and blood and bursting blister type things? If so, I will go back and try really hard to get a biopsy (which my OBGYN DID request). I have also read on line about ductal ectasia, which my symptoms also largely match. It says most women with this are smokers, which I am not and have never been. I am also not diabetic, which was another factor. I'm just frustrated and tired of worrying about why I get this thing every 5-6 months. I guess the bottom line is I just need to make them biopsy it. Thanks for any input.
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Hi, sorry that you are still having problems. I definitely would push for a biopsy, it's the only way you are going to find out .
Most doctors have never seen Paget's, no one at my hospital had, your symptoms are very similar to what I had but I do know it could also be a infection or other things.
I hope you get your biopsy and hopefully it's not Paget's but at least it would put your mind at rest.
Good luck and let us know how you get on.
Regards Lou.
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unfortunately sound lie my symptoms we mad itchy I ignored used cream would come n sort of clear but soon as I went to breast Dr he did a biopsy mentioned pagets but said didn't look like it and I was 45 but it unfortunately was positive I would push for a biopsy
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Hi everybody!
I lurked here on this forum of wonderfully supporting people before I got an account, but decided to join seeing as I am waiting biopsy results from a scaly, red nipple and am currently in the middle of my third freak out of the last two week.
Long story long:
I am 29 yo. I have atopic dermatitis, I had it as a child, grew out of it, then proceeded to grow it right back the last few years (yay body!). So I've gotten used to dry skin, redness and ichiness. and thought really nothing of it when one nipple(I can't even remember which one) with a couple of big flakes periodically showed up. Just though it was an interesting thing my nipple had chosen to do, so I picked of the scales, and thought nothing of it.
Fast forward to the start of October, I woke up with a stabbing pain right in my right nipple, so much that the only thing that could calm it was to press really hard on it. Next morning I noticed that my nipple AND part of my areola was peeling in big chunks. This was enough for me to take notice, and drench it in the the strongest cortisoid cream I had( high grade prescription stuff). Usually my eczema outbreaks clear up within a couple of days on the string stuff, but not this little bugger. It was always there, usually in the form of a darker red mark, but sometimes it decided to scale over again. Itching serverly on and off. I even had some clear, watery weeping at one point(not after that one time that I'm aware of).After a month of trying different cortisoid and moisturizeres I went to my(very young) GP, she examined my breast and armpits without noting anything, she the declared it as yeast and the prescription cream she gave almost cleared it, but again the bastard rash persisted. Cue full panic. early on i had googled, and of course found Paget's, but I decided to not go for the least probable, most serious cause without trying remedies for the benign conditions. but at this point I had tried all the stuff that usually works on everything itchy and scaly, and I subsequently broke down sobbing an entire weekend and booking a private dermatologist for the first Monday. At the derm I cried so much I could barely telle I had a rash on my boob, and she immediately said "so you googled and found Paget's". After telling her everything I have written in this post she took a fairly thorough look at my nipple and announced that it was atopic dermatitis, that it was fairly normal to get it on just one nipple and it was NOT Paget's and that my initial use of cortisoid had not been for a long and intense enough timeperiod. She thought the weeping was due to an infection in the eczema, and she would initially not take a biopsy (I had done my homework and knew what to ask for). I nagged for one anyways and are currently waiting for the results.
The swab test came back negative for yeast and infection so I don't think the weeping was due to infection.
I've been on a strong antibacterial cortisoid cream since I removed the stitches and my WHOLE nipple is now scaly and bright red. None of my eczema has reacted this way before.
I'm mad at myself for not checking it out early and now I am constantly thinking that, in addition to Paget's, the BC has spread is now stage IV. I keep feeling symptoms all over my body now. The right boob was the pretty, good boob, dammit!
tl/dr: increasingly more scaly, itchy, red nipple(+areola) with stabbing pain and at least one instance of clear watery weeping of the nipple. Derm thinks it is eczema, but to me the derm seems to be off on several things. Waiting for punch biopsy results. Very scared.
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Hi, oh dear I hope you get your results soon, the waiting is terrible !! Fingers crossed for good news for you.
Let us know how you get on.
Regards Lou.
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Thank you for the kind words, Lou. I'll take all the crossed fingers I can get!
Will keep you posted.
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