Paget’s of the nipple anyone?!

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SamAmomof3
SamAmomof3 Member Posts: 5
edited August 2019 in Just Diagnosed

hello all,

So sadly, I got the call that my punch biopsy results came back positive for Pagets. Which I am not too shocked considering the shape my nipple is in... but I'm scared to know what else I have. I am praying for DCIS at this point, but I'm sure I feel a lump about dime sized near my cleavage area deep in the tissue. I am told this is very rare, and my obgyn almost didn't take me seriously because I'm 31! In the last 7 years I have had 3 babies and nurses them all. I am looking for any and all experience with pagets. I am completely terrified and have no idea what is in store for me.

Thank you all !

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  • MBPooch
    MBPooch Member Posts: 229
    edited May 2019

    SamAmomof3 - I was diagnosed with Pagets about a year and a half ago at 46. This is the worse time, while you're going through testing and trying to develop a game plan. Have you had any other imaging or tests? After my diagnosis I had a MRI and did genetic testing. The MRI picked up the DCIS which was directly under the nipple and two other areas of concern, one in each breast. I did biopsy all 3 and while the DCIS was what we thought it was the other 2 spots were B9. Genetic testing also came back negative. There's no guarantees until the final pathology comes back but I felt as comfortable as I could about my situation prior to surgery. You can do this!

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  • SamAmomof3
    SamAmomof3 Member Posts: 5
    edited May 2019

    thank you for your reply!! I am so new to this and feel so alone in this weird , rare cancer. I am supposed to hear from my Drs in the next day to tell me where I go from here. I only had my dermatologist do a punch biopsy, and that’s what just came back positive for Pagets. I have no idea what they will do next. What comes next? How long does all this last?! I have a 2,4,6 year olds and my husband is in full time anesthesia school. Ug.

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  • MBPooch
    MBPooch Member Posts: 229
    edited May 2019

    Hopefully you'll get set up with a nurse navigator who will coordinate everything for you. Once I had the MRI, ultrasound and biopsies done I met with the oncologist, breast surgeon, plastic surgeon and genetic counselor all in the same week. Made it nice that they were all in the same building where all testing as well as surgery took place. I got my results for Pagets on October 16th and had my BMX on Nov. 31st. I could have had surgery a couple weeks earlier but was waiting for my daughters State meet and end of season before filling my kids in on everything. Once you have all the testing done and have a plan in place you will feel much better!

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  • vturner1650
    vturner1650 Member Posts: 5
    edited August 2019

    Hello,

    I recently had a punch biopsy done at the dermatologist office last week. I’ve had discoloration on both breast that started back in April, pain, Itching, and now a small amount of flaking skin on my left nipple. They told me that they wanted to check me for Pagets, but took two samples of skin near the areola and nipple but not actually touching. I thought to test for Pagets you had to take samples of the nipple or areola?

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