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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 10/9/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy Breast
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Aug 29, 2019 09:16AM 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 11/29/2017 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 10:26PM 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 10:52PM - edited Aug 30, 2019 10:58PM 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 29, 2019 12:27AM 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 7/23/2019 Radiation Therapy 9/24/2019 Hormonal Therapy 10/22/2019 Femara (letrozole)
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Nov 2, 2019 04:28PM 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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