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Topic: Pagets diease 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: May 20, 2017 04:05AM

Bay21004 wrote:

I was just diagnosed with Paget's disease of the breast on May 12th 2017 .At the time I had a biopsy done on my nipple and the results came back saying I have Pagers diease of the nipple on May 19th. I underwent surgery to remove the nipple and areola area and some surrounding tissue around. It is being sent to pathologhy for more testing. I want to know if anyone else is going through this and what was their next step in treatment? Did anyone do reconstruction surgery?

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May 20, 2017 05:51PM Moderators wrote:

Hi Bay21004-

We want to welcome you to our community here at BCO. We're sorry you find yourself here, but we hope you find these forums to be a place of support!

We have a fairly active thread on Paget's that you mind find helpful: Also, some info from our main site on the disease and treatment options:

We hope this is helpful!

The Mods

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May 21, 2017 10:39AM Lorri70 wrote:

Welcome Bay21004, I'm sorry you are joining us here, I've recently finished my treatment for Pagets Disease, I had 3 cm of Dcis also I had a lumpectomy In October 2016 and another in November as we didn't get clear margins I then had 20 sessions of radiation and I'm now taking Tamixofen for 5 years started that in march 17.

It's a really scary time but Pagets is very treatable, there is a Paget's disease of the breast section here with info from people like me who have been through this.

I thought the world was going to end when I was diagnosed, I was devastated and it's been a long road of emotion and upset but I'm at the other end now.

I haven't had reconstruction yet but I am having it hopefully in November as the dr said needs to be 6 months after radiation then he said 6 months from now even better he is going to round off my Pagets side and reconstruct a nipple then lift the other side to really looking forward to having this done as that's really the end of my journey

Dx 10/2016, DCIS/Paget's, Left, 3cm, Stage 0, Grade 2 Surgery 10/13/2016 Lumpectomy: Left Surgery 11/10/2016 Lumpectomy: Left Radiation Therapy 1/4/2017 Surgery 2/1/2018 Reconstruction (left): Nipple reconstruction Surgery 11/20/2018 Reconstruction (left): Nipple tattoo

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