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Topic: Paget's Disease of the Breast

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Dec 8, 2012 05:13PM

momtopiglet wrote:

Hi all-

During the summer of 2011 I began to experience flaking on my right nipple.  I showed it to my gyn at my yearly check-up, and she recommended using some hydrocortisone cream on it, and getting a mammogram.  The flaking continued off and on, and I finally got a mammogram about six months later.  The mammogram showed some calcifications in the nipple, so I was sent back for a diagnostic mammogram and U/S.  Both showed unusual changes, however, the radiologist was not concerned and recommended returning in six months.  However, at that point it had started to weep clear fluid occasionally, so he suggested seeing a breast surgeon.  

Two months later I went to see the surgeon, who recommended a biopsy.  It was the summer of 2012, and we were preparing to go on vacation.  I decided to put it off until I returned from vacation.  I came home and saw the surgeon again in September and had the biopsy. I was diagnosed with  Paget's Disease of the breast as my primary cancer.  No secondary cancers were found.  The entire nipple/ areola complex was removed two weeks later, followed by seven weeks of radiation.  

At this point (December 2012) I don't know if I'm going to do any reconstruction, but I might.  Paget's comprises only 2% of all breast cancers, but I would be interested to chat with anyone else with the same diagnoses.  Laughing

Dx 9/17/2012, Paget's, <1cm, Stage 0, Grade 1, 0/5 nodes, ER-/PR- Surgery 10/9/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy Breast
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Jan 5, 2018 04:30PM josie12345 wrote:

Well my consultation was pretty uneventful. The surgeon felt a kidney bean sized lump at the 6 oclock position, where the one biopsy was taken. I scheduled the mammogram and ultrasound for next Friday. Hopefully the results come back quickly. Fridays aren't so fun anymore... lol.


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Jan 6, 2018 07:43AM glennie19 wrote:

Hang in there, Josie!! Keep us posted..

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Jan 9, 2018 10:14AM LindsayG wrote:

I received a call today that I did not have Paget's and that I am being referred to a dermatologist! What a relief that I do not have Paget's! However, I am still concerned about my health as there are things going on around and inside of my breast that are unexplained like sharp shooting pains, throbbing, itching on the inside and outside, a slight fever, pain in the shoulder area and under my armpit. I am very thankful Paget's was ruled out, but I am not convienced that something else isn't going on. It coul be an infection of some sort, but whatever it is, I do not like it and I want it to go away quickly. Bless all of you angels that are going through this. I can't imagine what you are going through. I wish all of you ladies who read this thread and are waiting, to stay positive. I was convienced that I had cancer, and thankfully I don't at this time! Be your own advocate though and always seek attention! Doctors are humans and make mistakes.

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Jan 9, 2018 12:47PM mollyrose wrote:

So happy for you!

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Jan 10, 2018 01:10AM lou23 wrote:

Great news, so pleased for you.


Dx DCIS/translation missing: en.models.diagnosis.shorthand.type.paget''s, Left Surgery Lumpectomy: Left; Lymph node removal: Sentinel; Mastectomy: Left
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Jan 10, 2018 04:13PM glennie19 wrote:

Great news, Lindsey!!

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Jan 10, 2018 04:49PM - edited Jan 10, 2018 04:50PM by mollyrose

My mammogram and ultrasound were normal today, and I know that's often the case. My nipple symptoms have cleared up and are barely noticeable, but not gone altogether. My plan is to watch it for another couple weeks and unless it's completely resolved (and why would it after all these months?) I'm seeing my dermatologist and asking for a biopsy. I'd just him to see it when it looks bad, but I have taken pictures I could show him. This way if it is Pagets, I wont be locked into a certain b/s surgeon and will have more flexibility to research and decide where I want to have surgery, if it comes to that. best. m

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Jan 11, 2018 03:22AM lou23 wrote:

t

That sounds a good plan Molly, they can't biopsy when nothing to see. Good news tests came back ok. Keep in touch.

Regards Lou.

Dx DCIS/translation missing: en.models.diagnosis.shorthand.type.paget''s, Left Surgery Lumpectomy: Left; Lymph node removal: Sentinel; Mastectomy: Left
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Jan 11, 2018 07:40AM josie12345 wrote:

Great news, Lindsey!! Glad to hear it!

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Jan 11, 2018 03:31PM LindsayG wrote:

Thank you all for the encouragment and congratulations!

Today I seen the dermatologist. It wasn't as comforting as I had hoped. She looked at my nipple for about 2 seconds and said she was giving me a stronger steroid cream to try. One week on 2xdaily one week off. Come back to see her in a month if not gone away. She said that she could do another biopsy because sometimes the pathologist misses the cells or the punch wasn't in the right area. I said I did not want to have another biopsy done just yet. She said that was fine and to follow up, but if it doesn't clear up, she was going to do another biopsy and test it two different ways.

I have to follow up with my PCP to get a referral to a new GYN. I do not like the one I am currently seeing. He always brushes me off and I don't like that. She said to check off boxes and see what they say about the pains as well and keep and eye on everything! I know something is going on in my body due to the pains I am having in the area, but not sure what yet. Hopefully I will get some answers about that soon and I hope the creams help heal this area! Especially since it is only on the right side!

Good to hear Mollyrose!

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Jan 12, 2018 07:04AM mollyrose wrote:

At this point there's not much for my dermatologist to see as it's cleared up from my last flare...not 100% but I think he would think I'm being neurotic. I'd like to wait until it acts up again, I worry the biopsy might miss it. Ladies, when yours would come and go, do you remember how long it would stay inactive? Does it really clear up almost entirely and then come back? thanks

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Jan 12, 2018 07:20AM lou23 wrote:

Yes Molly, mine would look almost normal, panic over only to start again a few weeks later !!

Regards Lou.

Dx DCIS/translation missing: en.models.diagnosis.shorthand.type.paget''s, Left Surgery Lumpectomy: Left; Lymph node removal: Sentinel; Mastectomy: Left
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Jan 17, 2018 11:23AM josie12345 wrote:

Hi there ladies, Looking for some advice. So after my dermatologist confirmed Pagets, she referred me to a general surgeon for testing. Long story short, this office is horrible at returning calls, timely information etc. Has anyone had to do this backwards in regards to mammogram, ultrasound, etc and just moved to an oncologist? I'm really frustrated with the lack of follow up from my diagnostics with the surgeon, and think I need better care to get this taken care of. I'm a month out from the initial diagnosis, and playing phone tag with the surgeon over ultrasound results ( during the ultrasound they told me nothing showed up)

Any advice is appreciated and sorry for the rant.. so frustrating.

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Jan 17, 2018 12:53PM glennie19 wrote:

Oh, who frustrating. Can you call your derm back and tell them of the issue? Maybe they could recommend someone else? Or you may want to start off with an ONC, you'll need to see one anyway, and have them help you out with the surgery process. Things generally happen faster when one doctor talks to another,,,,

Best of luck.

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Jan 29, 2018 02:21PM Lorri70 wrote:

Hi I'm looking for advise on nipple reconstruction please, I got a letter today I'm having nipple reconstruction on Thursday I'm really looking forward to it lots of advise on here about nipple reconstruction but mostly its reconstruction from mastectomy. I had niple removed 3 cams of DCIS and 20 sessions of radiation, my breast Is said smaller than the other and looks square the dr is sorting the shape and doing the nipple then sorting the other side at a later date I'm looking for advise if it looks ok how long off work and does it look like a horror show I can't wait but I'm a bit worried now tbh any advise good or bad is welcome thanks

Dx 10/2016, DCIS/Paget's, Left, 3cm, Stage 0, Grade 2 Surgery 10/13/2016 Lumpectomy: Left Surgery 11/10/2016 Lumpectomy: Left Radiation Therapy 1/4/2017 Surgery 2/1/2018 Reconstruction (left): Nipple reconstruction
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Feb 5, 2018 06:13AM Nic148 wrote:

Hi everyone, I've been meaning to update you. I've been so busy and distracted lately, I just haven't got around to it. I got no answers from the biopsy, my letter just said "this confirms an inflammation of the skin and no confirming abnormality as to causes for this inflammation." So I've been referred to Dermatology to get their advice, my appointment is 14th February. I'm just so disappointed that the biopsy showed nothing, I just feel like I'm still in the dark about what it is. If the biopsy has showed something, I would at least know, and not be worrying about what it could be. Hopefully the visit to Dermatology gives me some answers, although I have a feeling they'll just give me more steroid cream. My symptoms are clearing up again, similar to what mollyrose and lou said. The skin doesn't look as inflamed but it still feels strange. I don't know how to describe it, it sort of feels thicker than the skin around it and I still have a lot of pain and itching, did that happen with any of you ladies?

Hope you're all well, nic x

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Feb 6, 2018 07:38PM mollyrose wrote:

So my punch biopsy came back as benign, they used the word inflammation. Once I knew, I told my siblings. One is married to an internist who asked me if ALL of the inflammation was removed in the biopsy and if not, how could they deem it benign? This is messing with my sense of relief! Is it common for a punch to miss the Pagets cells? I went to a very good surgeon at a great hospital! She said that while they weren't able to say what it was, the fact that the report did say inflammation and not just normal tissue was good because that told her that she didn't miss the mark in the punch.

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Feb 8, 2018 08:59PM TRACYLG wrote:

Hi Lou - I would like to confirm what you are discussing. Did you have Paget's with symptoms that would come and go? My symptoms are extreme itching, with redness, and a portion of the areola has swelling and is rough and dry. But then it seems to clear up, then flare up again. I saw the dermatologist many months ago, have tried several creams, had a 3D mammo and ultrasound, which showed nothing. I went to a new dermatologist yesterday and even though things looked fairly normal yesterday, she recommended a biopsy given the length of time this has been going on (over a year), and given a strong family history of breast cancer. Sometimes I think I am crazy, but luckily, I have been taking pictures and showed them to my dermatologist so she could see the flares. Everything I read says that Paget's progresses, but did you go from symptoms to no symptoms and back to symptons again? I have days without itching, then it flares again. Thanks!

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Feb 9, 2018 12:19AM lou23 wrote:

Molly I don't know how accurate they are, keep your eye on it.

Tracy yes my symptoms would come and go, good job you took photos.

Good luck with your biopsy, let us know how you get on.

Lou x

Dx DCIS/translation missing: en.models.diagnosis.shorthand.type.paget''s, Left Surgery Lumpectomy: Left; Lymph node removal: Sentinel; Mastectomy: Left
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Feb 16, 2018 09:02PM fishywishy wrote:

Last July (2017) I noticed a slight discharge from my left nipple. Went to doc, antibiotics, no change. We were then in Scotland, came back home to Jamaica mid-August, went to my GP, swab showed bacteria, cream didn't help, another course of antibiotics, no change. It came and went, once in a while bloody, no real pain. He sent me to a surgeon who sent me for mammogram, ultrasound and scans which showed zip. Surgeon thought skin condition so when he took the precautionary biopsy he took off the nipple and made a new one, thinking that might just do the trick. Off I went back to Scotland. He phoned December 19, Paget's. Malignant. Shock. 17 family in the house so didn't tell anyone, to spoil Christmas. Came home Jan 10 focused on early op, I wanted a double mastectomy, having seen what radiation can do and not wanting to think about the 10% chance of it developing in the other breast. A week's delay as concern about my heart meant more tests so I swam 50 laps every day and cut out fats, sugars, starches. I am 73 and overweight so they would not do reconstruction at the same time, I will have to decide if I really want another procedure. On Feb 6 both breasts removed. I am home, having physio, waiting for the biopsy results and trying not to think scary thoughts. My demeanour has been confident, composed, even funny but I get these moments still of shock and panic and loss. Great to see how many others have dealt with this and thanks for posting.

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Feb 16, 2018 09:21PM fishywishy wrote:

My scans and ultrasound were totally normal, NOTHING showed up. The excema covered a tiny centre bit of my always inverted nipple and the discharge came and went. Seven months and a double mastectomy and sentinel node removal, later, I STILL don't know if it was DCIS, invasive, HER2 or WHAT. Dunno if I am home free or must gear up for a fight. One thing I am certain of, anyone with anything peculiar on the nipple that dies not respond fairly promptly, get a wedge biopsy.

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Feb 17, 2018 12:17AM lou23 wrote:

Hi, sorry to hear you have also had Paget's the waiting is the worst , I have only had my left breast removed and no reconstruction I didn't want any more surgery as have already had alot over the last few years and also felt more chance of seeing if anything was going on again.I hope your recovery goes well and you don't have to wait too long for the results. Be careful and vigilant it is quite common to suffer with lymphoedema after a mastectomy, I have it in my arm and trunk.

Regards Lou.



Dx DCIS/translation missing: en.models.diagnosis.shorthand.type.paget''s, Left Surgery Lumpectomy: Left; Lymph node removal: Sentinel; Mastectomy: Left
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Feb 21, 2018 07:09PM TRACYLG wrote:

Hi Everyone. I have posted several times, I am so nervous. Had a punch biopsy on my areola (they did the rough, itchiest part) last Tuesday, they said the results could take up to two weeks. Of course, the itching and redness have gone away for now, but the swelling is still there. I know there could be several reasons for it taking long, but I am just concerned that they are having to do additional work to either determine what it is, or they are asking for another opinion. Gyn,derm and radiologist all said they didn't think it was Paget's, but the other derm that did the biopsy, who also doesn't think it's anything "really bad" said that it is definitely something. Thanks for listening.

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Feb 22, 2018 12:26AM lou23 wrote:

Hi Tracy, my biopsy results took 3 weeks it is terrible waiting, I hope it comes back soon and all is good. Keep us posted.

Lou x

Dx DCIS/translation missing: en.models.diagnosis.shorthand.type.paget''s, Left Surgery Lumpectomy: Left; Lymph node removal: Sentinel; Mastectomy: Left
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Feb 22, 2018 12:41AM TRACYLG wrote:

Thanks so much Lou, appreciate it.


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Mar 1, 2018 04:08AM - edited Mar 1, 2018 06:24AM by Lorri70

So let's see the hard evidence I do not believe this for one minute and it's not right posting things like this here on a cancer website

Dx 10/2016, DCIS/Paget's, Left, 3cm, Stage 0, Grade 2 Surgery 10/13/2016 Lumpectomy: Left Surgery 11/10/2016 Lumpectomy: Left Radiation Therapy 1/4/2017 Surgery 2/1/2018 Reconstruction (left): Nipple reconstruction
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Mar 8, 2018 09:57AM josie12345 wrote:

Left Mast for me this Tuesday.. fingers crossed everything goes well :)

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Mar 8, 2018 11:58AM lou23 wrote:

Hi Josie, wishing you all the best for Tuesday x

Dx DCIS/translation missing: en.models.diagnosis.shorthand.type.paget''s, Left Surgery Lumpectomy: Left; Lymph node removal: Sentinel; Mastectomy: Left
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Mar 8, 2018 12:53PM josie12345 wrote:

Thanks Lou! xxx

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Mar 8, 2018 12:58PM josie12345 wrote:

Fishy.. my symptoms were the same. Clear mammo, ultrasound etc. I had 7CMs show up on the MRI, and will be having a mast tuesday. My BS categorized it as DCIS, unless something changes on pathology. I will also have sentinel nodes removed (3) Hope this helps

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