Paget's Disease of the Breast
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Hi Ashley, hope all goes well for Tuesday, that's good you don't have to wait to long.
Keep us posted x
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Good luck, Ashley!!
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I'm so glad to see it wasn't Pagets on you, that really is such a relief. For the past few months, my left nipple and aeorla has changed to a more scaley texture, along with the worst itching and irritation. It bleeds and has a discharge as well. Im 18, and have a history of breast cancer running through most women in my family, but the only death was my grandma passed of progressed IDC, that ended up spreading when I was 4. I had two ultrasounds and both showed nothing. I've been warned though since I do have dense breast tissue that it may not show. I had a surgical biopsy Thursday, and waiting now on results. 3 stitches and man I'm still sore.I'm praying for all of you that you all stay healthy, and cancer free❤️
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Hi, hope the results are good for you too Hanna, a large portion of people who are tested haven't got it, so fingers crossed for you.
Hope you are ok Glennie, after recent surgery.
Good luck Lou x
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so I just called the doctors office and they said that my mammogram and ultrasound turned out clear.....so I guess my next step is getting a referral for a biopsy of my areola??
Still having quite a bit of pain
Thoughts??
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Definitely go for the biopsy x
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Hi everyone,
I went to the breast clinic on Wednesday and was so disheartened. Thought they would run some tests but I was in and out in 15 minutes. The dr quickly looked at my breast and said "it could be nipple eczema... let's try this steroid cream before we do any invasive tests." So I am back to where I was, trying more cream for another four weeks. The only progress this time was she said IF the cream doesn't work, at my next appointment, she'll do a biopsy. I know in my gut it's not going to work, but I get that these are just the hoops I need to jump through to get to the testing. So another four weeks of worrying and not knowing is in store for me but I'll get through it. I just wish she'd done the biopsy then and there but at least I know it will be done at the next appointment.
This thread is fantastic, it's good to have a place where you can talk about this. My partner, my family and most of the friends I've told about this are all trying to be positive and cheer me up when I'm down. Obviously I love them all for doing that, and I appreciate it so much but sometimes you just have to talk about your fears and worries, and just vent really. I feel like they all think I'm being negative and assuming the worst, but it's honestly just a feeling in my gut that this isn't right. Luckily I have one friend who lets me say what I need to say and voice my worries, she's been amazing throughout this.
Anyway, just wanted to post my update. My next appointment is 15th December. Hopefully the next four weeks fly in for me. Hope you're all doing well. x
Lala, that's great news! You must be feeling so relieved! x
Hanna, good luck with your results! x
Ashley, I'm not really any help with what you're going through as I seem to be at the same stage as you, if not a little behind. From what I've read on here, and in my information leaflet from the breast clinic, I would assume the biopsy would be your next stage. Hope everything goes well for you! x
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Hey Nic, hopefully time flies by and you can get more answers.
Seems like my discharge comes and goes every few days, not bad today but was leaking lile crazy yesturday. Pain is really bad too.
Might sound like TMI but did anyone else seem to get a hard nipple very easily? Seems like it's right my right (affected) nipple. Constantly poking out through my shirt but my left one stays normal.
I thought for sure My ultrasound or mammo would show some sort of blocked duct or something. My nipple and areola is so darn sore, hurts for anything to touch it. Is it possible that it is eczema even though I have no itching?
I'm 99% sure it probably isn't Pagets but something just keeps making me think to get further testing to ease my mind
I hate not having any answers, healthcare in Canada sucks too
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Hi all, I have read though all 32 pages of this thread and still have a specific question that I need quick help with. I have biopsies scheduled on Tuesday for calcifications on my R breast (right under / beneath the nipple area) and on L breast (around 1 o’clock up much higher). They were discovered on mamo. I have a whole other thread going about my PTSD problems with my initial mammogram and fears about the upcoming biopsies.
Here is my issue....for the past two years I have had many of the various pagets symptoms you all describe (other than crusting / oozing) on BOTH nipples/areolas. Since they can see a cluster of calcifications behind my R nipple and I am already going to be numbed up in that area, I am going to insist that they do a nipple biopsy on that side. But since no one on this thread seemed to have been diagnosed with pagets on both nipples at the same time, I am struggling with whether I should be insisting on a nipple biopsy on the L breast as well. That isn’t the area where the calcification cluster shows up on the L breast, so I won’t be numbed already and I knowthat having it in both nipples is extra rare....but...? Fortunately (or unfortunately) my itching and scaling is present on both sides right now, so at least the dr can see it..
Thanks for your advice.
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Hi Dagny, sorry to hear you are in this situation. I have a problem with my remaining breast but been told it is extremely unlikely and just to keep an eye on it, they think it is a serbacious cyst on my nipple.
When I had my biopsy unfortunately I was given no anysthetic they said giving me a local in the nipple would be as bad as taking the biopsy!! I must say it was extremely painful but only for a short while. It would be interesting to see if that is the norm.
Wishing you well, let us know how you get on
Regards Lou.
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thank you Lou. I am dreading the shots, but since I have no choice for the R side (since the calcifications are right underneath my nipple) I am for sure going to insist on the nipple biopsy. I guess I can see how bad the numbing shots are on the R side and let that help me decide about the L side! I am learning enough from these forums to realize that if I do have BC and might consider nipple saving surgery that wouldn't be possible without knowing for sure that there is no issue with the darn nipple to be saved
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Dagny, totally agree. And yes some things just have to be done not nice but necessary.
Hope all goes well for you xx
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Hi Lou,
Well, just back from the “pre” appt with my dr (she wanted to look at things and mark out the various places she would need to go in for the multiple biopsies in advance to save me time when I am there tomorrow since she knows I will be highly stressed and she wants to move quickly). Bad news is that she can’t do the test for the Pagets at the same time as she is doing the other biopsies. She said I would need to go to a different dr for that, she is going to see if she can make me an appt to have that done right after my other biopsies are done, but can’t guarantee it. So that for sure means that I won’t be getting the left side tested...since I will only be numb on the right side... but I am hoping that she can at least get me in for the right side. She agreed that the combination of my calcifications right behind the nipple plus the extreme itching and scaling are typical Pagets symptoms...so here’s fingers crossed that I can get the nipple biopsy tomorrow too.
Thanks for your support
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Dagny , hope all goes well for you today. Xx
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Dagny, hoping all goes well for you and you can get everything done quickly!!
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Hi everyone, new here, glad I found this message board.
I've had some issues with my breasts over the past few years, but nothing I would call too worrisome so far. I've had calcifications that show up ("loosely clustered") in the left breast, and some cysts that they've called me back in to look at, but that's it until last year in October 2016 (at age 46). My right breast became really sore throughout but mostly around the nipple. I felt a lot of burning and itching and noticed a small sore on the nipple itself, not the areola. This went on for about a week until I finally made an appointment to see my GYN. I'm an RN, so I tend not to worry about myself like I do the rest of my family! After it didn't get any better, I went into see my GYN. She could see the irritation. My right nipple was double the size of my left, and red. She also noted that my lymph nodes on that side were enlarged. She said it could be paget's, and sent me for an ultrasound and diagnostic mammo. Both showed nothing but a 2.5 cm mass in the OTHER breast, which turned out to be another cyst. So I didn't worry about it, but endured the irritating symptoms that ended up subsiding (but not entirely going away) after a few weeks. The right nipple never did go back to its normal size, and the "sore" healed over, but did not ever go away. The burning and itching would come back periodically over the last year, but I ignored it. I never had peeling or much discharge, that I noticed.
Fast forward to this current month, and it's starting back up again. I'm now 47. The "sore" is now inflamed, and itching again. The whole breast feels like it's burning throughout, even on the side of my breast and up into my armpit. Now the nipple is also peeling around the sore and the skin in the areola next to the sore is thickening, for lack of a better description. I went back to my GYN. She was more concerned this time and referred me to a breast surgeon and another diagnostic mammo and ultrasound.
I have the mammo/ultrasound appointment next Wednesday, but when I called the breast surgeon, the "new patient coordinator" was kind of bitchy and condescending. She said that unless the mammogram and ultrasound "show anything" then the breast surgeon will not give me an appointment for a biopsy. From what I understand, Pagets doesn't always show up on mammo and ultrasound. This frustrates me because I feel like the attitude I'm getting is "calm down, every woman thinks she has breast cancer and is hysterical (eye roll)"...if you get what I mean. That was her vibe on the phone. And being in the medical field, I am not the hysterical type, so I'm not sure why she was like this with me, but it really put me off. How do you get someone to give you a biopsy? Not sure why it's so difficult for them to do it. It seems simple enough.
Anyway, I just wanted to post here to vent and get any feedback. Thanks for reading my long post if you got this far!
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HillD11,
My OB/GYN suggested I see a dermatologist to have a biopsy done in order to determine what exactly was going on. I really think he thought it was probably just some minor skin thing but I'd already been scouting around on the internet and had an inkling it could be Paget's Disease. I told him I thought that's what it might turn out to be. He was surprised that I even knew what it was. "Oh, you know about that?". Anyhow, my daughter works in a dermatologist's office and told him I needed to have a biopsy. He told her to have me come in the next day and he did the biopsy. That was on a Tuesday. On Friday, the dermatologist's office informed me that the lab confirmed it was Paget's Disease. I'd had a mammogram and an MRI a month prior to the biopsy and they were both clear. So much for that!! It's my understanding that a biopsy is the most accurate way to confirm PD.
If you can get an appointment with a dermatologist, they should be able to perform a biopsy if nothing else but to rule OUT Paget's Disease. Have you tried to go that route?
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HillD: You are not a "hysterical" patient. You have legitimate concerns. I would suggest you call your GYN and tell them about this runaround that you are getting,,, have your GYN talk to the breast surgeon and insist that you get a biopsy done.
Mammo and MRI and ultrasound will NOT diagnose Paget's,, only a biopsy will. I am proof of that,, and so are many others on this board. Yes, you should go ahead and get those tests done,,, but having a biopsy only if they have some concerns from those tests is very wrong. This coordinator doesn't seem to know anything about Paget's.
Best of luck, and do keep us posted.
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Glennie and Nip,
Thanks so much for the responses! Nip, I will definitely go to a dermatologist if I can't get the breast surgeon to do a biopsy. Great idea, thank you. And Glennie, yes, I had already thought I would ask my GYN to call them if they won't do it. She's awesome, and was the one who actually mentioned Paget's to me, so I know she has it on her radar, and maybe they will listen to her. I guess I'll know more after next Wednesday.
Thanks a lot..
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Hi everyone, just an FYI, my discharge was tested and came back negative, but my biopsy came back positive for Paget's.
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Hi, so sorry to hear that hardmoney, i know how you must be feeling it's devastating, I hope you don't have to wait to long for treatment, we are here for you , i hope we can answer any questions for you , or just here to listen.
Kind regards Lou xxx
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hardmoney,,, sorry to hear that you are joining our club. We are here for you. Let us know if we can help.
HillD: glad you have a plan! Do keep us posted after you find out more next Weds. Hoping you do not have a struggle to get the tests you need.
And I'm off to surgery now, to have Righty removed (prophy),,,, see you soon.
glennie
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Glennie, good luck today! Let us know how you make out. We will be thinking of you.
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Hardmoney, like Glennie and Lou have said, we're sorry to hear the news. But we are here for you. It can seem overwhelming when you get that diagnosis so feel free to ask any questions or share any concerns you may have.
HillD, you definitely need to advocate for yourself. Don't be shy and ally yourself with those clinicians that support you and your concerns. If your GYN is one of those people, talk to her. This breast surgeon, I'm sure, is not the only one in town. Your GYN can likely refer you to another if you don't feel like they are taking your concerns seriously. I got a similar vibe from the first plastic surgeon I went to for my reconstruction. I went to my GYN and told her about my experience and asked her if she could recommend another. She gave me three other names and I made appointments with them all. After the first of those appointments, I found "the one". I absolutely love my plastic surgeon (and her entire staff) and I'm glad I didn't just accept the initial doctor. Keep us informed how you progress.
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Kmrbailey, thanks. My OBGYN did give me 3 names: one doc she told me was "extremely booked up", so I didn't even call her. The second doc doesn't take people without health insurance (I don't currently have any right now, and they didn't take "self pay", even though I assured them I would be able to pay up front), so I scratched those two off the list and went with the 3rd doc. I will probably call the first "busy" doc and just see if they can get me in. And I'll ask my OBGYN for more options.
Glennie, good luck today! I hope it went smoothly for you.. And yes, I will keep you guys posted. I really do appreciate the responses here.
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Hey all,,, I'm back ! Had the prophy MX yesterday,, was home in the afternoon. It's a little sore but not too bad. Haven't even taken any pain pills yet. It went as smoothly as I could have hoped.
HillD, I am glad you have other names. I agree, call that booked up doctor and see when you can get it. And ask GYN for more options too.
Hope my surgery sister is doing OK!!!
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Hi,glad your ok Glennie, hope your recovery is fast.
Regards Lou xxx
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Glennie, glad to hear you're recovering smoothly so far. I hope it continues that way, and that the pain keeps to a minimum. You deserve that at least!
I did call another breast surgeon today and got the same story, although more politely..
They said that unless anything is suspicious on the mammo or ultrasound, then no call for biopsy. If that's the case next Wednesday, I plan to go to a dermatologist on my own. I'll be updating as it goes.
Thanks for reading.
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Hi, HillD11 when I saw my specialist I had printed off info from the internet and highlighted where it was saying that Paget's can very often only be detected by a biopsy it doesn't show up on a MRI or ultrasound or mammogram . He didn't want to be shown this but read it and did the biopsy.
Regards Lou.
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