36 With new diagnosis of pagets

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Mommabear0316
Mommabear0316 Member Posts: 4
edited December 2017 in Just Diagnosed

I'm debating what I should do. I'm still waiting for BRCA testing. ultrasound and diagnostic Mammogram are negative. I'm really wanting a breast MRI. I'm at MD Anderson. So far looks like just pagets of the nipple. I'm worried because I'm so young. It is the rarest form of breast cancer. What if it's actually an indicator of something else underlying in my body? Who helps me decide those other things? Will the geneticist help me and test me for other things? I want to know! All I know is I have a scrape biopsy positive for CK 7 and CEA reactive. Lymphocytes in the epithelial layer. I'm thinking bilateral mastectomy with reconstruction. I don't want to go through radiation or take tamoxifen for 5 years if it’s estrogen pos

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  • MBPooch
    MBPooch Member Posts: 229
    edited December 2017

    Hi Mommabear, sorry that you've found yourself here. I was diagnosed at 45 in October. My mammogram was negative as well but after doing the MRI they detected DCIS under the Pagets. I did have an ultrasound to biopsy area found on MRI and they said they would have given me a clean bill of health as nothing showed up on the ultrasound. They wouldn't have detected the DCIS without the MRI results as the DCIS was directly under the nipple. Chest scan and blood panel as well as Genetic testing all came back negative but I knew I would never be able to relax without doing the BMX. I just had my surgery on Thursday Dec. 1st with immediate reconstruction/direct to implant. It wasn't nearly as bad as I thought, the first couple days were rough but nothing that can't be managed by taking the pain meds and a lot of rest. If you can, try to get the MRI, it was imperative for my peace of mind!

    Keep us posted on everything and try not to worry, it will all work out!

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  • Mommabear0316
    Mommabear0316 Member Posts: 4
    edited December 2017

    thank you! I’m pretty much set on a bilateral mastectomy. I’m just not wanting the risk that comes with tamoxifen and radiation. I guess I need to go ahead and meet the surgeon and get the ball rolling. I did send my physician an email asking for a breast MRI.. I just think it’s better to be aggressive.. I feel like they overlook us young women and err on the side of conservatism.. shoot I don’t care about loosing sensation I just need peace of mind

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