Newly diagnosed with medullary carcinoma

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Bernie440
Bernie440 Member Posts: 24
edited October 2021 in Less Common Types of Breast Cancer

Looks like I am a new member of this not so fun club. I am hoping to connect with others with invasive medullary carcinoma.  My tumor has all the characteristics of a true medullary, with the exception of her2 pos.  I had a lumpectomy two weeks ago on 8/20.  I met with the radiologist today.  Will need 3 weeks and 1 day of rads.  I meet with the onc next Friday.   

Stage 1 grade 3. 0/1 nodes Er- Pr- HER2 pos.  Lumpectomy 8/20/14

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  • Bernie440
    Bernie440 Member Posts: 24
    edited September 2014

    I was hoping to get at least 1 reply.  I met with the MO yesterday. We both agreed to go forward with radiation only.  I also got my mamma print result back. It showed high risk. But adding chemo didn't,t really make much difference in the stats. I am still curious if the mammo print results are skewed, they may not include anyone with medullary BC. Which always shows grade 3, but acts non aggressive.  

    I did ask about he hercepton since I am her positive.  He told me that is used in conjunction with chemo in stage IV only. 

    Anyhow, I start rads on 10/13 for 16 treatments

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  • ml143333
    ml143333 Member Posts: 658
    edited September 2014

    Bernie

    I am sorry that you had to join our group and that no one has responded to your post.  I don't have any frame of reference for medullary carcinoma as mine was/is IDC.

    With that being said, feel free to come here for support, venting, tears, laughter and more.  Feel free to PM me for moral support.

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  • Penguin688
    Penguin688 Member Posts: 4
    edited September 2014

    I was diagnosed with medullary breast cancer nearly 2 years ago. Originally, I was misdiagnosed for 10 months as the lump was soft and mobile; it also barely grew in size. When I eventually had a lumpectomy, the cancer was 11mm, with no spread to the lymph nodes or blood vessels. I still insisted on having chemo ( 4 sessions, and against the views of my surgeon and oncologist), BRCA testing - this proved negative and, finally, a double mastectomy. My surgeon thought all this treatment was 'over the top', but he did misdiagnose me, and my mother also passed away from breast cancer; I, therefore, feel my decisions were justified. Hope your treatment plan goes well.

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  • rava
    rava Member Posts: 49
    edited February 2015

    Hello Bernie. I just now saw your post. I was diagnosed with medullary carcinoma witch was her 2 positive in October 2011. You are the first I have seen with the same diagnose... Mine was very aggressive and had spread to7 nodes. I'm doing fine now 👍😊

    Wish you all the best!

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  • Eibra
    Eibra Member Posts: 24
    edited January 2017

    bum

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  • Eibra
    Eibra Member Posts: 24
    edited April 2017

    hellow ladies how have you been ? I just start tamoxifen this month .. i have test my tumor block in three hospitals two of them they said i have triple negative but the last one said i have 10% Er positive which the doctor consider to start tamoxifen.. any body have same experience? This may i will complete a year sonce my diagnosi

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  • Desirr77
    Desirr77 Member Posts: 31
    edited May 2017

    Dear Eibra,

    same here but the other way round. My initial diagnosis was NST with medullary features, ER positive, PR negative and Her2neu negative, palb2 positive. I initiated two more tests on hormone receptors (one molecular DNA based) and both came back negative. I skipped

    tamoxifen after 4 months then.

    I completed a year since diagnosis in February :-)


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  • Eibra
    Eibra Member Posts: 24
    edited May 2017

    dear Desirr

    That's interesting, i should ask for that, I don't know if it's available in my country, God always planning for our best ❤️🤗

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  • Eibra
    Eibra Member Posts: 24
    edited April 2018

    hi ladies any one of you got lung nodule ? Tinny one ? What was that

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  • Eibra
    Eibra Member Posts: 24
    edited October 2021

    hello

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