Paget's Disease of the Breast
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Hello ladies, my mom (age 81) told me she has had a red scaly patch of skin on her areola (not nipple) for a while (since fall of last year - on and off, she says). She showed me today, and it is like a crescent of redness/flakiness on areola only, occupying more than half of the circle of the areola. Her nipple looks fine.
It's not itchy, she doesn't have a discharge and doesn't feel any masses. We've scheduled a telehealth visit with a dermatologist for June 11th. Doctors around here are still not crazy about seeing people in the office, especially someone older. At least that's what dermatologist's office told me. I would like some input on how much I should insist on biopsy or for her to be seen in person. I guess the only reason Paget's jumped into my mind was because I frequent this site due to my own DX, and see this thread popping up now and then. I would be pretty clueless about it otherwise.
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Amb2288 I was diagnosed a year ago with Paget's Disease and had the symptoms for 3 years (long story) but was referred to a breast surgeon. I had my first surgery and it confirmed the Paget's and DCIS. My surgeon was not happy with the margins and I had a second surgery 2 weeks later. At that time I was given the option of lumpectomy or mastectomy. My surgeon felt the mastectomy was radical for my case. And I was told that one was no more effective than the other. I followed her advise. I also did some research and found that what she had said was true. However, in your case you might think differently if you test positive for the BRCA gene. Good Luck in whatever you decide. I had an excellent surgeon and felt very confident in what she told me. I was my own advocate along with my daughter...so we asked a million questions. One thing I did was ask to record our visit which was of great help to me later when I was wondering what exactly I was told. I am doing well and just turned 75. Life is good. I am so greatful that all of this happened last summer instead of this summer with the Covid. There is always something to be grateful for in life.
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I have been having Pagets symptoms for a year and saw my onc this week. He was totally dismissive, just like my previous doc. I'm due to have my regular mammo (onc ordered just a regular screening mammo...?) but from what I understand it may not show any signs of Pagets even if it is present. Ugh! So frustrated.
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helplesslyhoping....I had Paget's for 3 years......I saw a breast cancer surgeon and she did not push for me to have a biopsy......I would have if she had pushed......anyway I had clear mammogram, ultrasound and MRI. Nothing showed up and I was ok with it. Then 3 years later I noticed a difference in my nipple......my PC doctor said go see a breast surgeon. Old one had left the practice so went out of town and there was no question about anything.......she said looks like Paget's, we are doing surgery and we will go from there. No biopsy ......straight to surgery. Luckily I was told Paget's is slow growing. I would suggest you get a biopsy. I had very little symptons. Itchy breast one night after shower, red nipple and that was it.......about a year later the nipple inverted.......later the nipple came out again and things looked different. This was over a 3 year span. It would be so worth having a biopsy to ease your mind. Good Luck.
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Thank you for responding. I'm sorry that you had to go through so much for so long to get a diagnosis! I hope that you are doing well now.
My main symptom has been itching for a year, and then sometimes I have burning. My nipple has been permanently erect. Now I have a stabbing pain that goes right through my breast to my shoulder. I am amazed that my oncologist is able to wave it off, as if I didn't already have a history of IDC.
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Yes, it took me a long time, too, to get a diagnosis. 5+ years. My doctors relied on clear mammos and ultrasounds, and the fact that it was a rare diagnosis, which it turns out, was the wrong way to think about Paget's. It took the lesion getting to a pretty obvious point (growing red area inches across) for the dermatologist to finally do a biopsy. The biopsy is easy-peasy compared to the other procedures. It was my first breast biopsy, so while I was scared to get it and I never enjoy the first 5 seconds of the numbing shots, it's totally worth it to get answers (and looking at the cells under a microscope is the only way to know). The spot heals up fast.
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Hello again, I posted earlier that my mom (almost 82 year old) was experiencing redness and flakiness on one of her areolas. She had skin biopsy done and results are, unfortunately, Paget's. She hasn't had mammogram since she was 75. We have an appointment with a surgeon on the 20th, and mammogram on the 16th (her birthday!). Ugh, I wish there was a better present for her.
Having gone through breast cancer treatment myself, I wanted her to see my surgeon, but her first available was July 30th. So, we are seeing a different surgeon in the same system (also very reputable) while still keeping the 30th as a second opinion option.
I feel a little lost with Paget's, and I thought I knew a lot about breast cancer. If mammogram doesn't show any tumors in the breast, is MRI done routinely? My own DCIS on the left wasn't found until I had pre-treatment MRI (everything started with invasive cancer on the right), but I was 40 years old, so obviously my breast density was higher than my mom's. What are the questions I need to ask the surgeon? Is there anything specific a surgeon needs to know/be experienced with in terms of treating Paget's since this is such a rare diagnosis?
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مرحبًا بالجميع عمري 23 نحن منذ عام مع نبض خلف الحلمة الأيسر ودخولها معظم الوقت داخلها أصبح واضحًا في وقت لاحق على ارتفاع البرولاكتين وعند تناول الدواء ذهب النبض ، ولكن ظهر شعور حارق ومؤلم للغاية خلف الحلمة يمتد إلى الإبطين والظهر والمكالمات وظهور نقاط نقاط محترقة عند طرف الحلمة مع ثديين منتفخين ومضاد مؤلم للغاية لم يتم تطهير السونار أو الرنين ، واستمر الحرق لمدة ستة أشهر. ثم أصبح تورم الصدى ساخنًا جدًا خلف الحلمة. وجاءت تلك النقاط من على الحافة ، الرجاء مساعدتي.
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Sorry to hear that FarAwayToo. I had an MRI before my surgery. Paget's sometimes comes on its own (very rarely), sometimes with DCIS (about half the time), and sometimes with IDC (about half the time) - so it helps to have an MRI to see what else might be going on in the breast.
If it's on the nipple/areola without any underlying tumor, they usually will remove the nipple-areola complex, cutting around the nipple, and taking out some tissue below the nipple. They would probably do radiation after that.
If there's a tumor (or there's pre-cancer that is more widespread), they might go right to mastectomy. Any underlying tumor would drive the treatment; so if she has Paget's plus IDC, chemo and other tools might be part of the plan.
Good luck, FarAwayToo! I hope they are on this early.
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Hello
I have pain in my chest behind the nipple and under her arm 6 months ago and a small burning red in the tip of a nipple until Iam hurts me in 23 years, and I do not see anyone who thinks that all antibacterial and ointments do not work when I see the nipple showing very small red dots burning even !!! ! Please anyone who has the same problem as her
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- please answer meeee iam so painfull and scareHello
I have pain in my chest behind the nipple and under her arm 6 months ago and a small burning red in the tip of a nipple until Iam hurts me in 23 years, and I do not see anyone who thinks that all antibacterial and ointments do not work when I see the nipple showing very small red dots burning even !!! ! Please anyone who has the same problem as her
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Nooryi, sorry you have issues. It's hard to find someone who had the same symptoms, but if your providers are not giving you the answers or treatment you need, I encourage you to speak to other doctors.
alto - thank you so much for responding! Mom had lumpectomy and path report is back - no DCIS or invasive cancer, yay! Just 18 mm of Paget's in the skin of areola. I know this is rare, so hopefully we just caught it early. Also, I think, cancer generally grows slowly in older folks. We have an appointment with radiation oncologist for next week. I saw an MD Anderson treatment decision chart for Paget's that said that in the case of no underlying tumors observation after lumpectomy is an option. Of course, lumpectomy + rads is also an option. I'm skeptical about radiation at her age, but we shall see what RO says.
Paget's cells were negative for ER/PR, and they don't do HER2 on non invasive cancer (or so I was told), so I'm guessing no antihormonals for her. I read that only 10% of Paget's are hormone positive, but my understanding that applies to the cells on the skin itself. If there are other tumors in the breast, they can stain differently for hormone receptors. It took me aback a little, because hormone negative tumors in the breast are obviously higher risk than hormone sensitive ones.
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i had biopsy yestrday
Afew day waiting
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the result come nothing
Ido not know where the red spot go
And its stil grow in nipple and hurt
Doctor dont have any answer about me
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Hello everyone,
I am happy to find at least some discussion are about Pagets disease. I live in northern Europe and because Paget´s disease is so rare, I cannot find any discussions in my own language.
I was diagnosed with Paget´s disease (with DCIS) around 5 years ago, when I was about 43 years. I was operated and everything was fine -until now in control mammography and ultrasound there was "something" strange and a biopsy was needed. Result: invasive adenocarcinoma, gradus II. Not nice
Everything is still open and I am quite confused, probably still in shock. The treatments will begin after Christmas -first MRI, then meeting with the doctor and surgery in January.
Now I started to count 1+1 and wonder if the strange small pimple I have near anal aperture can hang together with Pagets? I have shown it for doctor´s but they have just been saying "it looks strange, we have to control it later again". I have a similar one on my left armpit. They are just a size of a rice corn. Has anyone else haft both Paget is breast and some pimples somewhere else?
Do you others feel that because of the rareness you want/have to find out things yourself? At the same time I trust our healtcare system highly -still I need support from people with same diagnosis. So thank you for all answers!
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My first sign of an issue was about five years ago. I woke up one morning and my tshirt was stuck to my left nipple. I pulled it off and it kind of hurt. I saw my NP a few months later because my nipple was red and sore to the touch. She thought it was a yeast infection and prescribed a couple of ointments. She also ordered a diagnostic mammogram and ultrasound. Neither of them showed anything. My NP said I should come back in a month but I didn't. The pain stopped but a rash started to grow. It was red and itchy but not painful to the touch anymore. I googled and was aware of Paget's Disease but thought surely not. Plus I was afraid of further testing. I thought it was just a persistent rash and I tried different creams on my own. Finally in September 2020 I went back to my NP. This time she thought it was a fungus and again prescribed a couple of creams. She also referred me to a dermatologist. This time I followed through and saw the dermatologist after trying the creams for weeks. At first I thought they were helping. She did a shave biopsy on a Monday and called on Friday, November 6, to say that unfortunately the report showed that it was Paget's Disease and it was also in my ducts. She referred me to a breast surgeon. The surgeon ordered a diagnostic mammogram that again showed nothing. I saw her on December 17 and the plan was made to do a central lumpectomy. I then had an MRI that showed possible noninvasive cancer cells so I had an MRI guided needle biopsy. It didn't show anything so the plan was to move forward with the central lumpectomy. On surgery day my surgeon said she had been thinking about it for weeks and thought a mastectomy was the better solution because the MRI had shown something, and also for the best chance for a good appearance later since I would lose so much volume with the central lumpectomy. I was shocked but agreed with her call. I had the surgery eight days ago. The pathology report confirmed Paget's and DCIS and that all was successfully removed. I have a tissue expander in and I'm finally getting used to it. I'm expecting at least a couple of more surgeries for reconstruction. I do regret not pursuing treatment years ago but I've had to let that go and forgive myself and concentrate on moving forward.
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Hi everyone,
I am 51 and was just diagnosed with Pagets this week. Had ultrasound and mammogram and nothing showed, but biopsy is of skin is positive. I have an appointment with surgeon Monday. Any advice? I am thinking they will do MRI to find underlying cancer? What type of cancer is typical ...dcis mostly or other? Will they check the other breast too? I feel numb all over and so weak after hearing this news. I want to think positive but am having a hard time. Thanks for any advice to get through this. I know it's rare so hoping someone is here with me. Although I wish no one had to go through this!
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Hi Lunafirefly100,
You're not alone. For me it was Paget's and DCIS. Today is 100 days since my diagnosis. I felt shocked and numb when I found out too, even though I knew it was a possibility. I had to wait what felt like forever to see a breast surgeon and make a plan. I had a mammogram, MRI, and MRI-guided biopsy before finally having a mastectomy and sentinel lymph node biopsy. I'm now two and a half weeks past surgery in the recovery before reconstruction phase. I'm starting to feel positive and optimistic, though I'm impatient to get back to “normal." Before surgery while I waited I spent a lot of time praying and trying to do things I enjoyed, like walking in the woods at parks and nature reserves and spending time with family, to keep myself occupied. I hope andpray that things go well for you.
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Hey everyone! A little background info: I'm 26 years old, no kids, never been pregnant. A few weeks ago I noticed my nipple was chapped and was "brushing" it with my hand to get the skin off and saw that I had bloody discharge coming from one duct. This concerned me because ~1.5 years ago I had orange/brown non-spontaneous discharge from that same nipple/duct and ended up having an ultrasound that led to them saying they did not know what it was. Well this time, an ultrasound also showed no signs of worry but they had me see a breast cancer surgeon because of the bloody discharge. The doctor could not express the discharge from my breast at the appointment but when further looking at my nipples noticed how different the one with discharge was and that it was a lot more dry and red than the other one. She wondered if it was Paget's Disease and so today I got a punch biopsy to see if that is what's happening.
When talking to her today she mentioned that my nipple today looks more like dermatitis, which is fine, I would rather have that outcome than any other. However, when I asked about the bloody discharge from a single duct on one side she mentioned that it could just be from an older infection, trauma, etc. But why would I be experiencing this kind of discharge from almost 2 years and now it is bloody? I just am worried that the pathology for pagets will come back normal and then I'm back to square one. Part of me also thinks that I'm worrying more because my mom had breast cancer (BRCA negative). Anyways, does anyone have any experience or advice with this kind of thing? If my pathology report is negative should I just leave it at that? Any info or stories would be really appreciated.
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Glad you posted. I'm also interested in Paget's for older woman. Traditional treatment of surgery seems too difficult for her overall declining health. We're going to palliative care for non-surgical options. What treatment plans do you have? Any info appreciated.
This is a very good site for exchanging all sorts of useful info.
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