Paget's Disease of the Breast
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Thinking positive thoughts for you lou! Do keep us posted.
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Stay positive, Lou,, but if the symptoms show up again,, run to doctor and insist on biopsy! ((hugs))
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Thank you both.
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Hi everyone! I'm new to all of this. I am almost 43 and have had an itchy nipple for around 4 years. In the beginning it was off and on for quite some time but has progressively gotten worse and the itching/tingling is pretty constant with occasional sharp pains. It has begun flaking/peeling/bleeding. Doctors never really took me seriously, and I've had many many mammograms - including a magnified view behind the nipple about 2-3 years ago. A few ultrasounds. I have tried every cream - antibacterial, antifungal, prescription steroids, and none have worked. All tests have come back normal until now.
I finally went to my doctor 1.5 months ago and said I HAVE to do something. 2 weeks later, she did another ultrasound, which the tech said I have 'dilated ducts' more dilated than the last ultrasound (but the last ultrasound 1.5 years ago they told me was normal at the time). My doctor said it might be Paget's or an adenoma (which makes me think they saw something on the ultrasound if she said adenoma). They did not send it to a radiologist to read (ugh!). So, I was referred to a surgeon who wanted to jump straight to surgery (without even seeing the ultrasound) and remove all of the ducts in my breast. No biopsy! He would then send the tissue to pathologist. He never mentioned Paget's. I'm waiting for a referral to get a second opinion.
I'm worried because I haven't heard of anyone whose doctor suspects Paget's not get a biopsy. It has only ever been the right nipple. Along with itching/tingling/bleeding/occasional pain, it is now getting kind of swollen or puffy. It also seems to be taking a very long time to move forward with anything.
I've noticed some here talking about thyroid but not sure why... is there a connection? I did have my thyroid removed almost 6 years ago. Also, last year I had an MRI of my neck (spinal issues) and they said I had scattered solid lymph nodes at multiple levels... no doctor seemed to know what to do with that info.
If there's anyone who can give me some guidance I would greatly appreciate it!!!
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Hello, everyone. I was very happy to run across this topic. I was diagnosed with Paget's yesterday, and I'm kinda numb. The doctor said I'm E and P positive, waiting on HR. He said he's hoping for HR negative. Why? (I didn't think to ask) I wish I would have recorded the visit yesterday. My husband and I can't seem to remember all the details
I have my first oncologist meeting on Monday, and and MRI to follow. Doctor said it's a strange case. Paget's with no tumors in the breast...on mammo, at least. MRI will look closer and also check some type of "gate keeper" lymph node. He drew a picture...very informative...lol. I'm doing my best to stay off the internet, but my friend suggested that I post here, and try to relax.
Why can't I just do surgery ASAP? Why delay?
Thanks everyone, and best wishes!
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Hi Meems,
Sorry that you have to go through all the back and forth with this. I'm not sure why they wouldn't do a biopsy first before performing a larger surgery? Biopsy is the only way to diagnose Paget's. Have you thought about a second opinion? I had similar symptoms as you did and my mammo, ultrasound and MRI were all clear. I had the biopsy and Paget's was confirmed. Within a month, I was having a mastectomy (my choice). I'm one year post surgery and no signs of any other issues. I encourage you to follow your gut and seek another opinion if you're not comfortable with your current doctor's course of action.
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kmrbailey, she is clearly quoting from a biopsy report with the estrogen and progesterone receptors and the HR pending. She has had a biopsy. They are investigating further with the MRI
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Hi Tanya,
Sorry to hear you've joined our little "club". Over the coming days and weeks you'll be taking in information like drinking from a fire hose. It's a lot to process. Ask questions - even if it's the same ones over and over until you feel like you understand. My mammo and ultrasound showed no tumors and my MRI showed nothing. To give you a sense of timing for me, I was diagnosed from my biopsy on April 15, 2016 and was having my mastectomy June 23, 2016. During that in-between time, I had my MRI, met with my breast surgeon a few times and interviewed several plastic surgeons until I found the right one for me. My decision to have a mastectomy (vs. a lumpectomy) was a personal one. I'm a single mother and my daughter was just finishing her junior year of high school so I felt that I wanted to go a bit more radical to ensure I wasn't constantly looking over my shoulder waiting for it to come back. I also had the sentinel node removed and it came back negative. One year later, I'm happy with my decision. I'm back to doing everything I did before - going to the gym, traveling and just doing everyday things. My advice to you is to just breathe. Paget's is not fast moving from what I understand and, while I know how much you want to get things moving along, know that you will be on the other side of this soon. And of course, we're here for you when you have questions or fears. I'm sure that at least one of us has been there at some point and we're happy to help. Keep us up to date on your progress.
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Hi Melissa,
Maybe I missed something. I see that Tanya had a biopsy (with the E+ P+ info) but my initial response was to Meems who does not have that information and no biopsy. She's concerned that a doctor has diagnosed her with Paget's without a biopsy. I think we can all agree that Paget's can only be diagnosed with a biopsy. I posted a separate reply to Tanya.
Sending all positive vibes!
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I too was diagnosed with Paget's and had no underlying tumors which, if you think about it, is probably the best case scenario because the cancer is confined to the nipple and isn't anywhere else. I had a choice of having a mastectomy or a lumpectomy After discussing the options with my breast surgeon, I felt like a mastectomy was overkill and my surgeon agreed. So, I had a lumpectomy (they removed the nipple, but I still have my breast so I don't have to wear special bras or have breast re-construction, etc!) followed by 16 sessions of radiation. I never felt that any of this was particularly scary or difficult... just a bit inconvenient with all the appointments and necessary treatments. I take care of my grandbaby full-time while my daughter works and wondered how in the heck I would manage. But I just hauled him and my husband with me to every appointment and they waited for me in the waiting room. The hardest part for me was healing after the radiation ended. I was itchy and my skin looked burnt and peeled like crazy. The skin on my chest is still discolored from the radiation but it's a small price to pay to get rid of the cancer. Here's my timeline:
Jan 31, 2017 - Breast biopsy
Feb. 3, 2017 - Lab work confirmed Paget's Disease. I figured that's what it was and had already found a breast surgeon just in case.
Feb. 9, 2017 - Consultation with breast surgeon
Feb. 13, 2017 - Breast MRI (no underlying tumor)
Mar. 3, 2017 - Outpatient Surgery - lumpectomy. My surgery was at 7:30 am and I was home around 11:30 am.
Mar. 30, 2017 - Consultation with radiologist
Apr 6, 2017 - Radiation treatment #1
Apr 28, 2017 - Radiation treatment #160 -
Hi All,
Sorry if I was unclear. I had a punch biopsy done last Monday. My Paget's was confirmed through biopsy. Told family members today (including my 18 and 15 year old). Not fun.
You guys are the absolute best. Thank you so much for the replies, well wishes, and support. 0 -
Well. Today I met with my Oncologist. I'm going to capitalize that, because he's important.
He decided I need to have a CT as well as an MRI. Those are both on Friday. I meet with a Geneticist tomorrow to look for BRAC? Plastic Surgeon meeting is also on Friday. My head is spinning. HR2 negative. Doc said that's a good thing. Hang in there, everyone 0 -
Nip,
Hey it's been a while. So glad things are going well for you! I was wondering how you were doing. Cheers to you!
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Tanya,
I'm happy to hear that your oncologist is doing all the tests. I'm of the opinion that it's better to look at this from all different angles. I had my genetic testing done in March and got the results 7-8 weeks later. I had a pretty broad panel testing. I tested negative for the BRCA1 and BRCA2 gene mutations (most common breast cancer indicators) but did test positive for a mutation in the CHEK2 gene. This mutation is also an indicator for breast cancer (among several other cancers). My daughter will do her genetic testing in a few weeks and we'll find out if I passed this along to her. Information is power. You've got this. Keep moving forward and do the next right thing for you. One step at a time. We're here anytime. Good luck and let us know how it goes on Friday!
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Hello! Well, the journey continues...
Underlying cancer found, but close to the nipple area of my right breast per MRI. Normal finding for IDC & Paget's. Left breast showed more calcifications. CT came back clean. Lymph nodes were normal. (I will have lymph node biopsy as part of surgery, however.) On a smaller note...I have a gall stone! (lol...like I really care about a gall stone right now!)
I'm planning on bilateral mastectomy with implant reconstruction. I looked into DIEP reconstruction, as well, but I don't think that is the right choice for me. So expanders will happen. I am feeling pretty OK. I was hoping just to have a lumpectomy, but that's not the best option for me. I guess I get to pick out what size I want to be now? I honestly have no idea. The surgeon said he could get everything scheduled soon, within a couple of weeks, so that was a surprise. Fast!
I'm taking a deep breath now....
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Tanyatwhite, take care I think you will feel better when the plans in place best of luck let us know how you get on
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Hi all,
I'm a 51 year old woman living in Sweden, and I'm one of you, since I was diagnosed with Paget's disease of the nipple a few weeks ago. I've read through the whole thread here and have had a lot of use of your stories and information already. Thank you!
It seems to me that many of you have similar stories to mine. I've had my symptoms for quite some time. I haven't had much itching and it doesn't look like an eczema, more like a healing ulcer. I didn't get a biopsy the first time I showed it at the breast clinic, and when it finally got biopsied the surgeon was surprised when it came back with Paget's cells.
My surgery is planned for the 24th of August. I will get an MRI the same week, and the decision of BCT (which is the preliminary route) or mastectomy as the first step will be made once we know the results. Mammography and ultrasound haven't shown anything other than an unclear densification of the nipple, but I've learnt that this may very well be misleading.
So, here I am! Best wishes to all!
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Hi Latemom, I'm sorry you are joining us here,but you are welcome you will find great information here on this website,it's very scary when you are diagnoised and you'll feel lots of things anger sadness fear, I thought it was the worst thing ever my rash which all the medical people thought was ezcema turned out to be Pagets,I prayed it wouldn't be Pagets (being an Irish catholic lol) I'd 2 lumpectomies then 20 sessions of radiation. I am great now and I'm finally feeling normal again I'm returning to work next month after 11 months off and going back spinning tommorow night. I'm also having a nipple reconstruction in November or December then that really will be the end of my journey. Pagets isn't a death sentence it's very treatable you need to go with it ride it out.Best of luck and come on here to ask questions have a rant or anything
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Hi,
Welcome to our newcomers, sorry you have to be here.
It has been over 2 years now since I was diagnosed, I am feeling back to my old self again.
I hope your surgery goes well, I know it is a hard time now whilst waiting. Keep in touch.
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Hi I was with my breast DR in May where he agreed to do a nipple reconstruction and lift the other side, I didn't have a mastectomy I had 2 lumpectomies in Oct and November followed by 20 sessions of radiation the Dr said it would be better to wait a year from the operation which is November, my breast needs a fat graft or an implant as it's square shape,it's quiet a bit smaller than the other one and the skin feels leathery I put moisturiepser on it but it's making no difference, I assume this is damage and no amount of cream is gonna soften it??.will this make a difference for reconstruction? I didn't ask the DR any questions in May cause I was so happy he was gonna sort me out now I've lots of questions, will he decrease the non cancer side or increase the cancer one? Any feed back is welcome.
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Hi Lorri , I am sorry I can't help you as I had a mastectomy, but I would suggest asking your GP or breath care nurse if you can't get to speak to your surgeon, I hope all goes well for you xx
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Thanks Lou, I have made an appointment with my DR for Tomorrow, I had started menopause just before the cancer diagnosis, I took Tamixofen for 5 months the last 2 months I was having hot flashes and feeling down I stopped the Tamixofen I'm feeling much better but omg the hot flashes are so bad now I need something I'm pouring with sweat dripping down my neck, I need to take something for them I'm feeling a bit unwell tbh
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Lorri hope all goes well at the doctor's let us know how you get on.
Hot flushes are terrible, I was on HRT for a year before been diagnosed with Paget's, I still get them at night!!
Take care xxx
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Hi everyone,
I have many of the symptoms of Paget's. On and off for maybe a year and a half/two years, I've had a patch of what looks like eczema on my left areola.
I was originally prescribed an antibiotic cream and it cleaned up. It came back again a few months later and my nurse gave me the cream again and it cleared up. Third time it appeared, she said I'd become immune to the cream and gave me a stronger steroid cream. It didn't clear up, and around this time started to become itchy and more sensitive, it was bleeding and discharging yellow fluid. She then prescribed oral antibiotics and said if that didn't work, to see my GP.
It didn't work, so I saw my GP two weeks ago, she thought it was irritation from clothes/change in detergent etc. She gave me more cream and antibiotics and said to come back in a week. At the next appointment she noticed the discharge wasn't as heavy but the areola was still very inflamed (and still itchy/painful). She then gave me another steroid cream and told me to come back in a week! However, this time she asked if there's a history of breast cancer in the family (not in the last couple of generations, but my great grandmother had breast cancer). This is what got me worried, and how I found this page.
In the last few days, the pain has become worse. The slightest pressure on my breast is painful, even putting on a bra hurts and I cannot lie on that side. The pain also feels like it's spreading to my side and my underarm.
I don't know if this is Paget's as I haven't had any tests done. I guess I'm just here to ask for advice and to see if this sounds familiar to anyone?
Thanks in advance x
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Hi Nic, sorry that you find yourself here. I didn't have pain like you are describing. My areola was itchy and I had a scaly patch on it, that would come and go.
You go back to see the GP after a week? Can you get a referral to a dermatologist for a look at the rash area? This seems like it has been going on for a long time, and perhaps a biopsy may be necessary to be sure that this is not Paget's. I am very concerned about how much pain you are having, and your doctor needs to get rolling on this STAT.
Please keep us posted.
glennie
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Hi NIC, i agree with Glennie I think you need a biopsy done this is the only way to identify Paget's. Hopefully it will not be Paget's but I do think you need to rule it out.
My symptoms were very similar to yours and yes I did have pain, don't let them fob you off with ultra sound and mammograms they don't show up Paget's.
For Peace of mind I would do this asap.
Let us know how you get on.
All the best
Lou.xx
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Hi Glennie and Lou,
Thank you so much for replying, I really appreciate it. I am going to call my GP on Monday and make an appointment for sometime this coming week.
I will mention to the doctor I want a biopsy done to confirm or rule out Paget's. I will keep you all updated.
Thank you again
Nic x
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It's a year ago yesterdaythat I got my diagnosis, it's kind of surreal looking back the utter shock when the DR at the breast clinic told me the terror I felt, thinking I'd be leaving my fab husband and my 3 children, thinking what's life all about being so afraid.itsa year on I'd 2 lumpectomies and a month of radiation that was tough looking back I dunno how I did it.
I had good support from my family friends and my work were fantastic, I returned to work recently and I'm all good and back to normal.Thank God for modern medicine,or it may have been a very different story.
For anyone who's had a diagnosis recently or going through treatment try to think positive and get through the days, weeks and months, cause before you know it you'll be like me a year out and amazed by how strong you actually are, hugs to all.0 -
Hello all -
Just joined, and glad to see that there is a forum for Paget's. I am 32, and was diagnosed with Paget's a little more than a month ago, before they also discovered that I also have stage 2/3 breast cancer
Had symptoms since last November... looked like a crack through my nipple, with general itchiness, little bit of weeping. Didn't think much of it since I had so much else going on with other health scares in my family. Saw a bunch of doctors as it didn't get any better, all didn;t know what it was. Went through hydrocortisone, steroids. Weeping gradually got worse and so did the crack, and the texture of the nipple started changing, getting more swollen. Had a biopsy done mid-August of this year, and got the diagnosis a week after that.
It's been a roller coaster for me, but it's nice to know there are other going through the same thing.
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Hi Amunya-
We want to welcome you to our community, and just let you know that while we're sorry you find yourself here, we're glad you've joined us, and hope you find this community to be a source of support as you continue down this road.
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