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All TopicsForum: Less Common Types of Breast Cancer → Topic: Paget's Disease of the Breast

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 06:13PM

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 10/10/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy Breast
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Jan 5, 2018 05:30PM 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 08:43AM 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 8/8/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Jan 9, 2018 11:14AM 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 01:47PM mollyrose wrote:

So happy for you!

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Jan 10, 2018 02:10AM 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 05:13PM 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 8/8/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Jan 10, 2018 05:49PM - edited Jan 10, 2018 05:50PM 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 04:22AM 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 08:40AM josie12345 wrote:

Great news, Lindsey!! Glad to hear it!

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Jan 11, 2018 04:31PM 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 08:04AM 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 08:20AM 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 12:23PM 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 01:53PM 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 8/8/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS

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