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Topic: Pagets?

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: Nov 26, 2018 07:06PM

Ssl9281 wrote:

Hi everyone, I am wondering if anyone has had pagets like symptoms that turned out not to be pagets? I am 37 years old and for the past 5 months my left nipple has gone through a cycle where it will look relatively normal, peel, then look normal again. This happens probably at least 3 times each month. When it peels, I just peel the dry skin off and it will be a little sensitive for a day or 2 then goes back to looking back normal. My nipple is cracked in the center & I have a non spontaneous milk like discharge ( I have known elevated prolactin levels so this doesn’t really concern me) & the center of the nipple looks very slight worn away. The changes are very subtle and unless you are really looking, it looks normal. My gyn is unconcerned while I’m convinced it’s pagets. I’m trying to get into a dermatologist but most have months long waits. I’m also concerned if I see the dermatologist when it’s not actively peeling that they are going to think I’m crazy. It’s not red, it doesn’t scab, no oozing and it only itches immediately after I peel the skin. Does this sound like pagets? Has anyone had anything similar and what was it? Thank you. Log in to post a reply

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Nov 27, 2018 04:37AM Hopetihopeful wrote:

Hello there fellow owner of weird nipple!

I'm currently waiting for results of my punch biopsy. My nipple is like the angry version of yours. I don't have scab or oozing either. The scaling would come and go, but the last month I noticed it never really got back to its old colour even when it wasn't peeling. And the last couple of months it has gotten red and itched quite badly. Do you have a history of eczema? Have you tried over the counter cortisoid cream? Or cream again fungi?

When I went to the the dermatologist(paid out of pocket) she took one look and said "eczema". I do have atopic dermatitis, but this bugger of a "rash" didn't respond to my strong prescription steroid creams. She claimed that it I fairly common to get dermatitis on just one nipple (a lot more common than Paget's). Mine wasn't scaling at the moment of my appointment, but I had taken a picture(supersexy) and it was still discolored so she could see where to do the biopsy. I insisted on the biopsy since I had already tried fungi and eczema treatment. Now that my biopsy wound has healed I'm on a hardcord steroid treatment plan(if I don't get bad news from the biopsy).

You probably just have dry skin/eczema, but I would get a (punch)biopsy just for the peace of mind. In regards to the waiting lists at the dermatologist; maybe you could volunteer to take an appointment if someone has to cancel on short notice? Maybe your GP can do the biopsy? I would also recommend taking a picture of it when it is peeling in case they try to dismiss you when you get there.

Hope you find it to be something benign!

Hugs!

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Nov 28, 2018 04:10PM KeriK wrote:

Hi - Best of luck to you both. I'm waiting on my punch biopsy results with suspicion of Paget's disease. I had it done yesterday.


Praying for eczema for us all!

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Nov 28, 2018 07:46PM MBPooch wrote:

Hi Ladies - hoping all of you get B9 results! Ssl9281 - my symptoms were very similar to yours. I never had any bleeding or oozing and even after my diagnosis every Dr I saw said they would have never guessed it was Pagets. Since diagnosis can only be made by a punch biopsy find some where you can get in to have that done. I ended up going through a dermatologist. Keep us posted, fingers crossed!

Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 13, 2019 01:11AM Ssl9281 wrote:

I just saw both a dermatologist and s breast surgeon the other day. Both think it is dermatitis. The dermatologist is having me try diaper cream on the nipple to see if it helps...little ridiculous if you ask me. Both declined to do biopsy or any imaging at this time. I go back to the breast surgeon in 6 weeks. If it’s not better by then, then a biopsy will be done. I’m just very discouraged. This has been going on over 6 months. What if it is Pagets? By the time they find it, who knows where it will be? I don’t know if I should see another dermatologist or just wait. Considering all the things I’ve already tried to clear this, I highly doubt diaper cream will. Has anyone gotten biopsy results?
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Jan 13, 2019 03:10AM MBPooch wrote:

Ssl9281 - Even after my diagnosis, the dermatologist and the oncologist all said they would have never guessed I had pagets. My nipple looked completely normal as it was in a non-peeling phase. Have you tried over the counter cortisone cream? I did that and then the prescription steroid cream from the dermatologist, then demanded the punch biopsy which confirmed what I thought I had. Both my mammogram and ultra-sound came back clean so do not rely on imaging. Punch biopsy is the only way to know for sure. Keep us posted!

Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 13, 2019 02:48PM Ssl9281 wrote:

What was your age at diagnosis? I’m 37 and I feel like that’s a big part of why I’m not being taken seriously. I have tried everything from over the counter steroids, antifungqls, creams to prescription antibiotic cream, steroids, etc. The only reassuring thing is the surgeon felt no masses which means for a better prognosis but I want real answers. The surgeon said after 6 months with pagets the nipple would have broken open by now. The nipple is cracked but no ulceration. I don’t know anymore...
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Feb 18, 2019 05:01AM Sunflower182 wrote:

What do you mean by the nipple is cracked but no ulceration? What’s the difference and what does the doctor mean when they say it would be cracked open? I’m having Pagets worries myself and I’m 27, so also feeling like not being taken seriously :(

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Feb 18, 2019 04:28PM MBPooch wrote:

Ssl9281 - Not sure why I never saw your previous post. Sorry! I was 45 at time of diagnosis. Looking back I had been having symptoms for about 6 months prior. I never had an open wound on my nipple, no bleeding or oozing and no itching either. My nipple would just peel and at times look irritated. Only other symptom was that it always seemed more erect than the other. When it was not peeling, it looked totally normal to the naked eye. I had DCIS underneath the Pagets that was detected by an MRI but mammogram and ultra sound were clean and no lump could be felt.

The only way to diagnose Pagets is with a punch biopsy so insist on getting that done if you feel your symptoms aren't going away. My dermatologist did mine.


Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 20, 2019 03:35PM Ssl9281 wrote:

I just wanted to update that I saw the dermatologist this morning and the biopsy was finally done. Over 6 months after this issue started & 3 doctors basically telling me I was crazy. Up to 2 week wait for biopsy results, good or bad. I’m glad it’s finally done but anxious for the results. Not sure what kind of biopsy was performed but I’m guessing punch because there are 2 areas now where you can skin was removed from. As long as this is able to looked at under a microscope I don’t care how it was done! Sunflower, my nipple has had a crack in the center of it but no open skin. By ulceration, I meant open skin. Just lots of on & off peeling & redness, irritation, pain, & just looking different than it used to.
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Feb 20, 2019 09:18PM MBPooch wrote:

Glad you finally got it done! Hoping the results are B9, keep us posted!

Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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