ATM gene and radiation

Options
zucchini
zucchini Member Posts: 15
edited April 2021 in Genetic Testing

Have any of you tested positive for atm and had radiation? I've been told about oncologists saying no radiation for atm. But also heard others recommending it. I'm in the middle of deciding whether or not to have radiation after my chemo. And, honestly, it's so scary to not even have a good basis or even risk percentage to help make a decision. My radiation oncologist printed some of the latest reputable studies for me to read and has offered to answer any questions I have. The thing seems to be that nobody really knows anything scientifically provable at this point beyond anecdotes or what they've personally seen. And it feels like a damned if I do damned if I don't hindsight will be the only tell sort of decision.


Did any of you have to make this choice for yourself? What were you counselled to do or not do? Any of you years out from radiation and willing to share?


Thanks so much.

· Share on FacebookShare on Twitter

Comments

  • scoleman2013
    scoleman2013 Member Posts: 1
    edited October 2020

    I am ATM positive. I had chemo for a little over a year. The doctor did not say that radiation was needed. I was diagnosed on 7/1/13. I am still here doing well. I would ask what your doctor is suggesting for your treatment. 💗

    · Share on FacebookShare on Twitter
  • zucchini
    zucchini Member Posts: 15
    edited October 2020

    Thank you for your response. I'm so happy to hear you're still here and doing well.💗

    My radiation oncologist is suggesting it based on staging and type. ATM gene is the one factor that could give pause to the recommendation. He even said because we don't know enough about ATM it's a risk either way and he'd base a decision off of percentage gain overall, if it was his family. Trouble is, we don't know the percentage of risk I'd be taking due to carrying the mutation.

    I'm pretty sure I'm hoping for certainty where I just can't have it.

    · Share on FacebookShare on Twitter
  • Paradisi
    Paradisi Member Posts: 1
    edited November 2020

    I just found out that I have the ATM gene mutation. 4th generation mother to daughter breast cancer in my family.

    The geneticist did say that I should avoid having unnecessary radiation; so I am glad I’d already decided to have a bilateral mastectomy. I made the decision just assuming there had to be a genetic component in my family - known or unknown.

    · Share on FacebookShare on Twitter
  • kei-kei
    kei-kei Member Posts: 1
    edited December 2020

    Paradisi, I also have ATM. My mother had breast cancer at 32 and 52 and passed from pancreatic cancer in 2018. My question is were you recommended to do the bilateral mastectomy or was that a personal decision? I have been googling back and forth myself with this and just wondering your thoughts process. Thank you.

    · Share on FacebookShare on Twitter
  • Fieryskyz
    Fieryskyz Member Posts: 4
    edited January 2021

    I have a variant of uncertain significance (VUS) in the ATM gene and was advised by the geneticist that medical management decisions should not be made based on my VUS result. Given this, I'm having a hard time deciding on lumpectomy vs UMX vs BMX, especially since I'm only 40. I have a grandmother and great grandmother who also had breast cancer, so I worry if the ATM variant could contribute to a future recurrence without enough research on the variant yet. I'm currently going through chemo prior to surgery, and radiation is TBD afterward.

    Similar to Kei-Kei's question above, are your doctors recommending one surgery type vs another with having ATM or an ATM VUS result? And was your genetic result positive or uncertain for ATM? Thanks!

    · Share on FacebookShare on Twitter
  • zucchini
    zucchini Member Posts: 15
    edited April 2021

    Hi, my variant is in the known pathogenic category. Several other family members have been diagnosed with cancers in the past and after me. My surgery type was recommended based on other factors from testing and imaging. I had dense breasts and dcis detected in both of them. The mri also indicated proliferative breast disease. It turned out after surgery the imaging and biopsies had missed IDC and lymph node involvement.

    I decided to have the radiation. The cancer I had (hopefully had not have) was very aggressive and had reached the lymph nodes. I know only time will tell if I have secondary effects from it. I wanted to throw everything we could at the cancer we knew I had. Which is what drove my decision in the end.

    · Share on FacebookShare on Twitter

Categories