ATM Gene Mutation-Anyone else?

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anne67
anne67 Member Posts: 36
edited July 2018 in High Risk of Recurrence or Second Breast Cancer

I found out recently that I have the ATM gene mutation. I had DCIS 6 years ago, at the age of 44. I had a lumpectomy, 3 weeks of radiation and did 5 years of Tamoxifen. I consider myself very lucky. My mom has the mutation and has had breast cancer in her 40’s, colon cancer in her 50’s, a second breast cancer at 71 and pancreatic cancer at 73. All of these cancers were much more severe than mine. Anyone else out there test positive for ATM?

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  • farmerjo
    farmerjo Member Posts: 518
    edited May 2018

    Here here!

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  • SimoneRC
    SimoneRC Member Posts: 419
    edited July 2018

    Yes, I have ATM mutation as well. Aside from avoiding radiation, having regular breast surveillance (if you still have breasts), regular colonoscopies have any other ATM’ers received any other advice?

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  • pebee
    pebee Member Posts: 317
    edited July 2018

    Just found out that I have it. I had radiation 6 years ago when I was treated. My mom tested negative so we know that it came from my dad who passed from bladdar and prostrate cancer.

    My recommendation from a genetic oncologist is annual MRI to catch any recurrence early. Also, screenings for pancreatic cancer and my primary care doc needs to keep an eye on any heart issues. I was told to watch general radiation and ask if tests are needed (um, yeah, that is working). Nothing on colonoscopies. For near relatives that are descended from my dad, increased screenings and test including prostrate for the guys and earlier baselines for mammograms.

    The main comments that I got were

    1) we just found this one so we are not sure of all of the implications

    2) it needs a celebrity - say an Angelina Jolie type - to get the word out and focus research on it specifically.

    Anyone else?

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  • anne67
    anne67 Member Posts: 36
    edited July 2018

    My mom had the ATM gene mutation and I found out last summer that I carry it. My mom had two breast cancers, skin cancers and ultimately pancreatic cancer (which she unfortunately died of two months ago). She had colon cancer has well, but the genetic counselor I met with last year told me that so little was known about ATM, that they were unsure whether colon cancer was associated with it. At my last oncologist visit however, (I have switched to Northwestern in Chicago, a research hospital), I was told to have my colonoscopies every three years rather than every five years because I carry the ATM mutation.

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  • anne67
    anne67 Member Posts: 36
    edited July 2018

    Have you had any screenings for pancreatic cancer yet? I’m just wondering what it involves. I’m only 50, but since I lost my mom to pancreatic cancer, I’mwondering when to get started with screenings and how often. My oncologist hasn’t mentioned anything about pancreatic screening so far, but I am going to ask about it at my next visit.

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