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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 10/10/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy Breast
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Aug 29, 2019 08:16AM MBPooch wrote:

vturner1650 - I would agree that would seem to defeat the purpose. My punch biopsy was directly from the nipple. Keep us updated on the findings.

Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/28/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 30, 2019 09:26PM vturner1650 wrote:

My biopsy results came back today. They were negative for Pagets. I was told that I have an infection and eczema. I pray those findings are accurate since they didn’t do the biopsy from the nipple area. They prescribed a steroid cream that I’m to apply for 2 weeks, and antibiotics. Hopefully that clears up whatever is going on. I go back in December for another mammogram to follow up on a mass I had a biopsy on back in June.

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Aug 30, 2019 09:52PM - edited Aug 30, 2019 09:58PM by alto

I had a patch of reddish skin on my areola, and they did the biopsy at the edge (half on the areola, half on skin). If you are concerned they didn't get the right thing, you can go back for another biopsy. Keep a close eye on it and go right back if it keeps causing you trouble, or there are changes or if it gets worse.

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/11/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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Oct 28, 2019 11:27PM twolutzjo wrote:

So glad there is this site. I had the first signs of Paget's 3 years ago. Itchy nipple once after shower and then it turned red. That was about it. . I went to a breast Dr. and had mammogram, ultrasound or sonogram, and a breast MRI. Nothing showed up. She mentioned Paget's but was not too concerned. Her explanation of the biopsy was that they could miss the cancer. So I chose to do nothing. About a year later the nipple inverted. This past year the nipple came out and it looked different. I was referred to a breast surgeon. She heard my history, gave me a breast exam, mentioned Paget's and set me up for removal of nipple. That being done the path report verified Paget and DCIS. The margins were not as clear as she wanted. My choice was a mastectomy or removal of the areola. She felt mastectomy was radical in my case and that the results were the same. So the areola was removed. I had clear margins and did 16 days of radiation with 5 added boosters. I am now on Letrozole(generic for Femara). Just started on Oct. 23. Concerned about side effects ......but keeping a journal. Anyone out there taking Als? I am thinking positive and living life to its fullest.


Dx 6/2019, DCIS/Paget's, Left, 1cm, Stage 0, Grade 3, ER+/PR-, HER2+ (IHC) Surgery 7/11/2019 Lumpectomy: Left Surgery 7/22/2019 Radiation Therapy 9/23/2019 Hormonal Therapy 10/22/2019 Femara (letrozole)
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Nov 2, 2019 03:28PM lou23 wrote:

Hi, sorry you have been diagnosed but happy you are having treatment.

I had a mastectomy but had no further treatment so sorry I can't help you about side effects but hoping someone on here can.

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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Dec 21, 2019 10:33PM - edited Dec 21, 2019 10:37PM by Mamax2

hi! Sorry for the long read!

I'm in need of some serious support! 2 months ago my son and I got thrush, both treated and completely cleared up but my right nipple just kept getting worse. My doctor prescribed more meds and creams but nothing cleared it up. It became cracked very bad, lots of white thick flakey patches, inverted nipple, yellowish discharge, pain and a heck of alot of blood. I did some research and found paget's. My nipple looks exactly like all the references and the symptoms all fit. My doctor refuses to do anything as I'm only 23, even though they found a tumor in the same breast 2 years ago. My nipple and breast became so bad I went to an ER. They did an US, was told they couldn't discuss the results that I'd have to see a specialist. Well they sent the US results to my doctor who refused to do anything. Her response was "it looked like your milk ducts are changing along with some other tissue, I think it's just mastitis." I had mastitis 8 months ago. And it was nothing like my symptoms now. The doctor decided to cancel my specialist appointment. I'm extremely worried. With her saying the milk ducts are changing(only on the affect side) and my tumor has grown that it really might be paget's.

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Dec 22, 2019 01:19PM MBPooch wrote:

Mamax2 - If you haven't done so already I would suggest going to a dermatologist. I had DCIS behind the nipple that was not picked up on a mammogram or ultrasound, only an MRI after getting the pagets diagnosis. It was a dermatologist who did the punch biopsy of the nipple, pagets can only be diagnosed by having that done. Hopefully you can get some answers going that route.

Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/28/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 24, 2019 01:47AM lou23 wrote:

Hi, sorry to hear you are having these problems, I agree with mamax the only way to diagnose is a punch biopsy.

I hope you can find someone to do this for you.

Good luck and let us know how you get on.

All the best 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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Dec 25, 2019 07:20PM Ataraneh24 wrote:

  • I’m wondering what all your peeling looked like? I’ve had symptoms for three months- itching, sensitivity to any touch, stabbing pains, and a tiny almost imperceptible amount of peeling. When I go to the docs they say they don’t see any peeling. But occasionally I’ll see tiny little white specks of skin. I have seen it on the good nipple too, but not as much. I can also get the good nipple to have little specks if I scratch it. They are so tiny I have to look pretty close to see them. Is this different from your peeling? Everyone that I’ve had look at it say it’s not Paget’s, but it doesn’t feel right. I also have a dent in that breast that has been there for a long time and lots of lumps. I am 32. Ultrasound and mammogram were negative. Insurance won’t cover an mri and docs won’t do a biopsy. I’m just not sure if this is normal or if it’s the type of peeling that comes with Paget’s. They keep telling me it’s hormones, but why all these feelings in one nipple? Seriously boobs are the worst body part. I feel like They’re a ticking time bomb.
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Dec 26, 2019 09:46AM lou23 wrote:

Hi, mine was a red patch more like a sore and bled occasionally. Quite painful and itchy.

Hope this helps.

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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Dec 26, 2019 11:22AM Ataraneh24 wrote:

Thanks for your response lou23. That’s what it seems most people have. I do not have a patch. It’s just generalized. I hope you had a wonderful holiday!

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Dec 26, 2019 01:24PM lou23 wrote:

Thank you, and you 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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Dec 28, 2019 01:33PM - edited Dec 28, 2019 01:33PM by twolutzjo

Hi All,

Haven't checked in in awhile. I was diagnosed with Paget's. Mine began with my nipple itching like crazy one night. Then it turned beet red and remained that color for 3 years. The nipple inverted. I had no other itching episodes, no scaling of skin, no drainage from nipple. Just had a weird looking nipple. Then about 2 or 2 and 1/2 years later the nipple came out and it just looked different. No other signs or anything. Saw a breast cancer surgeon who said it looked like Paget's and she would go in and remove the nipple. No biopsy or anything. Just remove it. Could be because signs had been present for 3 years. All mammograms were negative and an ultrasound was negative as was an MRI when done 3 years ago with first signs. Mamax2 I would definitely find someone else to look at it. With Paget's often there is a secondary cancer. With me it was DCIS. Did my radiation and am now on Letrozole. Doing well. Hope this helps. Not all symptoms are the same.

Dx 6/2019, DCIS/Paget's, Left, 1cm, Stage 0, Grade 3, ER+/PR-, HER2+ (IHC) Surgery 7/11/2019 Lumpectomy: Left Surgery 7/22/2019 Radiation Therapy 9/23/2019 Hormonal Therapy 10/22/2019 Femara (letrozole)
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Dec 29, 2019 09:12PM Ataraneh24 wrote:

twolitzjo,

That makes me feel better to see that people that have had it for a long time are ok and that it’s not incurable. It must be a slow growing cancer.

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Jan 6, 2020 07:59PM twolutzjo wrote:

Ataraneh24 my breast surgeon told me it is a slow growing cancer. At this time I am cancer-free but am taking letrozole, with minimal side effects so far. Feel like I am blessed. Hope all goes well for you.

Dx 6/2019, DCIS/Paget's, Left, 1cm, Stage 0, Grade 3, ER+/PR-, HER2+ (IHC) Surgery 7/11/2019 Lumpectomy: Left Surgery 7/22/2019 Radiation Therapy 9/23/2019 Hormonal Therapy 10/22/2019 Femara (letrozole)
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Jan 22, 2020 09:34PM Dmm4863 wrote:

  • Hello. I have not been diagnosed, but I am a little concerned. I have had breast "problems" since I grew them! :0/. Lumpectomy at 16 (benign), multiple cysts. Never a normal mammogram. They all so abnormalities they call calcifications. Two biopsies or two different areas. One was "inconclusive" and the other benign. Two markers injected...All this on the right breast only. For the last 4 months Ms. Right Breast nipple started itching, and tingling (like a nerve sensation). This happens all day long. Very, very scant drainage (nipple feels sticky, but not enough to say color). Saw a breast surgeon and she said she wasn't worried because no skin lesions. I do feel changes (thickening) to that nipple, but she didn't see any problem. I've had a gazillion mammograms, a few ultrasounds. I asked if I should have an MRI, and she said "nah. I'm not worried". What do you think? Am I paranoid? I am 56 BTW. Positive family hx of Breast CA. Thanks so much for listening. Donna
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Jan 23, 2020 01:36PM MBPooch wrote:

Hi Donna,

Have you tried an over the counter anti-fungal yet? I never had any itchiness or lesions, just a subtle change in the thickness of my nipple and sometimes it would be a slightly red. One thing that was very obvious to me was was that it was harder and thicker than the other. Even after my diagnosis everyone that looked at my breast was surprised by how normal it looked.

I did have a mammogram first but after that came back normal my GYN referred me to a Dermatologist after topical creams weren't working. He put me on a steroid cream but that didn't work either. The ONLY way to test for Pagets is by doing a punch biopsy. I had that done through my dermatologist. If you haven't tried an over the counter cream, try that and see if you get any relief. If not try a dermatologist, it could just be eczema. Keep us posted!

Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/28/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 28, 2020 08:09AM lou23 wrote:

Hi Just a question for those who have been diagnosed with Paget's, have any of you been diagnosed with Osteopetrosis it is the opposite to Osteoporosis.?

I was told I had this about 8 years ago, they said my bones are brittle and prone to breaking easily , quite rare and sometimes called marble bone.

I was also told I was more prone to breast cancer and then a few years later was diagnosed with Paget's.

Just interested to see if any of you have the same problem.

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 24, 2020 02:52AM Cdnv123 wrote:

Hello ! New here. I also haven't been diagnosed but I am quite worried about recent changes and symptoms ! I'm currently waiting for an appt with a dermatologist to get looked at.

My changes were quite similar to you mbpombpooch! Although I do or did have some itching. It started when I was a few months pregnant I had a tiny patch of dry skin which cream helped. It wasn't until further along in my pregnancy when I started with the intense itching in both breasts which I thought was just changed due to my pregnancy. Well when my milk started to come in a few days after having my babyboy the intense itching started again. I figured I may have a yeast infection but the itch wouldn't go away. I tried a cream prescribed from my dr and the itching went away but came back when I stopped.

I'm now using regular cream and the itching has completely stopped however I do have a thickened skin on my nipple and areola. And they do both look off to me. But mbpooch I'm wondering if this happened to you also. But when my nipples are not erect they look quite normal. But when the nipples are erect is when the thickening of the skin to my areola are more prominent. You can noticed the changes. Hope this makes sense!

All I can do for now is wait for my dermatologist appt and go from there but just wondering if any similar experiences with the thickened skin as right now that is my only concern as the itching has gone and the patchy dry skin is gone as well with me using regular cream.


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Feb 24, 2020 11:29AM MBPooch wrote:

Cdnv123 - Glad to hear you have an appt with a dermatologist. I didn't have any issues with itching at all and all my symptoms were only with the one breast. If you have/had issues with both chances are it's not pagets and something else is going on. I didn't have any thickening of the skin, my biggest issues were redness and that the one nipple nipple was always erect. Keep us posted on your appt!

Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/28/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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