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Topic: ATM gene and radiation

Forum: Genetic Testing —

ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, and mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM)

Posted on: Sep 25, 2020 05:42PM

zucchini wrote:

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.

May 2020 DCIS both sides, atm gene, July 2020 BMX, July 2020 IDC 2a, er+, her2+, Aug 2020 TCHP chemo & immunotherapy
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Oct 8, 2020 12:20PM scoleman2013 wrote:

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. πŸ’—

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Oct 10, 2020 09:59PM zucchini wrote:

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

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.

May 2020 DCIS both sides, atm gene, July 2020 BMX, July 2020 IDC 2a, er+, her2+, Aug 2020 TCHP chemo & immunotherapy

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