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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 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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Apr 27, 2020 07:17PM MBPooch wrote:

Glad you're getting it checked out! I didn't have any itching really. It was more that my nipple stayed erect and was always more red than the other. It hurt more than it itched. Keep us posted on what you hear!

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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Jun 1, 2020 11:14PM Amb2288 wrote:

Hi All,

New here, just diagnosed with Pagets, DCIS last week. I'm 31, had some bloody discharge for 1 week in February 2020. That cleared and a slight redness for 2 more months. All invasive testings, mammogram, guided ultrasound and biopsy on a mass they found were benign. I knew something wasn't right, so I pushed for the nipple biopsy, even though my doctor said, most likely not Pagets. Please advocate for yourself. Doctors are wonderful and do their best, but in the end they are human. They are sending me for genetic testing as I'm shaping up to be candidate for BRCA genes. At this point lumpectomy or matescomy are my options. Does anyone have any advice or which way to go? They laid out the information in terms of local recurrence or overall survival. Im leaning towards the lumpectomy, but scared to make the wrong decision. Any advice is helpful!

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Jun 5, 2020 06:25PM FarAwayToo wrote:

Hello ladies, my mom (age 81) told me she has had a red scaly patch of skin on her areola (not nipple) for a while (since fall of last year - on and off, she says). She showed me today, and it is like a crescent of redness/flakiness on areola only, occupying more than half of the circle of the areola. Her nipple looks fine.

It's not itchy, she doesn't have a discharge and doesn't feel any masses. We've scheduled a telehealth visit with a dermatologist for June 11th. Doctors around here are still not crazy about seeing people in the office, especially someone older. At least that's what dermatologist's office told me. I would like some input on how much I should insist on biopsy or for her to be seen in person. I guess the only reason Paget's jumped into my mind was because I frequent this site due to my own DX, and see this thread popping up now and then. I would be pretty clueless about it otherwise.

Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/23/2018 Zoladex (goserelin) Surgery 2/28/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/5/2018 Femara (letrozole) Surgery 8/21/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jul 11, 2020 06:45PM twolutzjo wrote:

Amb2288 I was diagnosed a year ago with Paget's Disease and had the symptoms for 3 years (long story) but was referred to a breast surgeon. I had my first surgery and it confirmed the Paget's and DCIS. My surgeon was not happy with the margins and I had a second surgery 2 weeks later. At that time I was given the option of lumpectomy or mastectomy. My surgeon felt the mastectomy was radical for my case. And I was told that one was no more effective than the other. I followed her advise. I also did some research and found that what she had said was true. However, in your case you might think differently if you test positive for the BRCA gene. Good Luck in whatever you decide. I had an excellent surgeon and felt very confident in what she told me. I was my own advocate along with my daughter...so we asked a million questions. One thing I did was ask to record our visit which was of great help to me later when I was wondering what exactly I was told. I am doing well and just turned 75. Life is good. I am so greatful that all of this happened last summer instead of this summer with the Covid. There is always something to be grateful for in life.

Dx 6/2019, DCIS/Paget's, Left, 1cm, Stage 0, Grade 3, ER+/PR-, HER2+ (IHC) Surgery 7/11/2019 Lumpectomy: Left Surgery 7/23/2019 Radiation Therapy 9/23/2019 Hormonal Therapy 10/22/2019 Femara (letrozole)
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Jul 11, 2020 10:36PM helplesslyhoping wrote:

I have been having Pagets symptoms for a year and saw my onc this week. He was totally dismissive, just like my previous doc. I'm due to have my regular mammo (onc ordered just a regular screening mammo...?) but from what I understand it may not show any signs of Pagets even if it is present. Ugh! So frustrated. :(

Dx 4/20/2015, IDC, Left, 6cm+, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery Mastectomy: Left Chemotherapy AC + T (Taxol) Hormonal Therapy Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 12, 2020 11:51AM twolutzjo wrote:

helplesslyhoping....I had Paget's for 3 years......I saw a breast cancer surgeon and she did not push for me to have a biopsy......I would have if she had pushed......anyway I had clear mammogram, ultrasound and MRI. Nothing showed up and I was ok with it. Then 3 years later I noticed a difference in my nipple......my PC doctor said go see a breast surgeon. Old one had left the practice so went out of town and there was no question about anything.......she said looks like Paget's, we are doing surgery and we will go from there. No biopsy ......straight to surgery. Luckily I was told Paget's is slow growing. I would suggest you get a biopsy. I had very little symptons. Itchy breast one night after shower, red nipple and that was it.......about a year later the nipple inverted.......later the nipple came out again and things looked different. This was over a 3 year span. It would be so worth having a biopsy to ease your mind. Good Luck.

Dx 6/2019, DCIS/Paget's, Left, 1cm, Stage 0, Grade 3, ER+/PR-, HER2+ (IHC) Surgery 7/11/2019 Lumpectomy: Left Surgery 7/23/2019 Radiation Therapy 9/23/2019 Hormonal Therapy 10/22/2019 Femara (letrozole)
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Jul 12, 2020 10:33PM helplesslyhoping wrote:

Thank you for responding. I'm sorry that you had to go through so much for so long to get a diagnosis! I hope that you are doing well now.

My main symptom has been itching for a year, and then sometimes I have burning. My nipple has been permanently erect. Now I have a stabbing pain that goes right through my breast to my shoulder. I am amazed that my oncologist is able to wave it off, as if I didn't already have a history of IDC.


Dx 4/20/2015, IDC, Left, 6cm+, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery Mastectomy: Left Chemotherapy AC + T (Taxol) Hormonal Therapy Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 13, 2020 11:22AM alto wrote:

Yes, it took me a long time, too, to get a diagnosis. 5+ years. My doctors relied on clear mammos and ultrasounds, and the fact that it was a rare diagnosis, which it turns out, was the wrong way to think about Paget's. It took the lesion getting to a pretty obvious point (growing red area inches across) for the dermatologist to finally do a biopsy. The biopsy is easy-peasy compared to the other procedures. It was my first breast biopsy, so while I was scared to get it and I never enjoy the first 5 seconds of the numbing shots, it's totally worth it to get answers (and looking at the cells under a microscope is the only way to know). The spot heals up fast.

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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Jul 15, 2020 12:33AM FarAwayToo wrote:

Hello again, I posted earlier that my mom (almost 82 year old) was experiencing redness and flakiness on one of her areolas. She had skin biopsy done and results are, unfortunately, Paget's. She hasn't had mammogram since she was 75. We have an appointment with a surgeon on the 20th, and mammogram on the 16th (her birthday!). Ugh, I wish there was a better present for her.

Having gone through breast cancer treatment myself, I wanted her to see my surgeon, but her first available was July 30th. So, we are seeing a different surgeon in the same system (also very reputable) while still keeping the 30th as a second opinion option.

I feel a little lost with Paget's, and I thought I knew a lot about breast cancer. If mammogram doesn't show any tumors in the breast, is MRI done routinely? My own DCIS on the left wasn't found until I had pre-treatment MRI (everything started with invasive cancer on the right), but I was 40 years old, so obviously my breast density was higher than my mom's. What are the questions I need to ask the surgeon? Is there anything specific a surgeon needs to know/be experienced with in terms of treating Paget's since this is such a rare diagnosis?

Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/23/2018 Zoladex (goserelin) Surgery 2/28/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/5/2018 Femara (letrozole) Surgery 8/21/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jul 21, 2020 07:20PM Noory wrote:

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Aug 5, 2020 09:32PM - edited Aug 5, 2020 10:02PM by alto

Sorry to hear that FarAwayToo. I had an MRI before my surgery. Paget's sometimes comes on its own (very rarely), sometimes with DCIS (about half the time), and sometimes with IDC (about half the time) - so it helps to have an MRI to see what else might be going on in the breast.

If it's on the nipple/areola without any underlying tumor, they usually will remove the nipple-areola complex, cutting around the nipple, and taking out some tissue below the nipple. They would probably do radiation after that.

If there's a tumor (or there's pre-cancer that is more widespread), they might go right to mastectomy. Any underlying tumor would drive the treatment; so if she has Paget's plus IDC, chemo and other tools might be part of the plan.

Good luck, FarAwayToo! I hope they are on this early.

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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Aug 5, 2020 10:24PM - edited Aug 5, 2020 10:50PM by Nooryi

Hello

I have pain in my chest behind the nipple and under her arm 6 months ago and a small burning red in the tip of a nipple until Iam hurts me in 23 years, and I do not see anyone who thinks that all antibacterial and ointments do not work when I see the nipple showing very small red dots burning even !!! ! Please anyone who has the same problem as her

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Aug 5, 2020 10:59PM Nooryi wrote:

  • please answer meeee iam so painfull and scareHello

I have pain in my chest behind the nipple and under her arm 6 months ago and a small burning red in the tip of a nipple until Iam hurts me in 23 years, and I do not see anyone who thinks that all antibacterial and ointments do not work when I see the nipple showing very small red dots burning even !!! ! Please anyone who has the same problem as her

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Aug 8, 2020 03:09PM FarAwayToo wrote:

Nooryi, sorry you have issues. It's hard to find someone who had the same symptoms, but if your providers are not giving you the answers or treatment you need, I encourage you to speak to other doctors.

alto - thank you so much for responding! Mom had lumpectomy and path report is back - no DCIS or invasive cancer, yay! Just 18 mm of Paget's in the skin of areola. I know this is rare, so hopefully we just caught it early. Also, I think, cancer generally grows slowly in older folks. We have an appointment with radiation oncologist for next week. I saw an MD Anderson treatment decision chart for Paget's that said that in the case of no underlying tumors observation after lumpectomy is an option. Of course, lumpectomy + rads is also an option. I'm skeptical about radiation at her age, but we shall see what RO says.

Paget's cells were negative for ER/PR, and they don't do HER2 on non invasive cancer (or so I was told), so I'm guessing no antihormonals for her. I read that only 10% of Paget's are hormone positive, but my understanding that applies to the cells on the skin itself. If there are other tumors in the breast, they can stain differently for hormone receptors. It took me aback a little, because hormone negative tumors in the breast are obviously higher risk than hormone sensitive ones.

Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/23/2018 Zoladex (goserelin) Surgery 2/28/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/5/2018 Femara (letrozole) Surgery 8/21/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Aug 16, 2020 04:54AM - edited Aug 16, 2020 04:57AM by Nooryi

i had biopsy yestrday

Afew day waiting

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Sep 7, 2020 07:44PM - edited Sep 7, 2020 07:45PM by Nooryi

the result come nothing

Ido not know where the red spot go

And its stil grow in nipple and hurt

Doctor dont have any answer about me

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