Double mastectomy due to ATM gene

Posted by zoro @zoro, Jul 20 7:43am

I had a double mastectomy due to high risk atm gene. I was told that since I have no breast tissue I do not need to take anti cancer medication because I don’t have breast. But I still have a 5% chance of contracting cancer elsewhere in the body. I don’t know if that 5% chance is inclusive for atm patients. Since my doctor did not clarify the difference I am guessing she does not know. Does anyone else know the statistics

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kissmekate48 | @kissmekate48 | Jul 26 6:08am

Did you have BC? ATM folks are ~30% more likely to get BC.

I don’t know the statistics but I can tell you I have the ATM gene, had a double mastectomy and was ER+ Stage 0+ (the tumor was so small the biopsy removed it; they couldn’t find it in the tissue from the mastectomy). No evidence in lymph nodes. No chemo or radiation but I’m doing an AI and managing the side effects.

I’m 60, 2 yrs out and I just graduated from seeing my oncologist. BC can still show up in my breast wall (and wouldn’t be found until it was large) or close to the skin. Cells could be elsewhere in my body potentially. Especially given the ATM gene, I will take anything to improve my odds. I’m being screened annually for pancreatic cancer too. My goal is to have as many healthy years as possible—I’ll fight to stay on the AI for as long as I can. I think the AI brought mine down to 8% which is not 0 / still higher than I’d like. And ATM isn’t factored into my oncotype score. Did you get an oncotype score?

Happy to chat about the ATM gene my genetic friend! 🙂