ATM Gene Mutation and Care

Posted by marciski @marciski, Aug 30, 2018

I am the ATM gene mutation. I had early stage breast cancer in the left breast 4 years ago and I am considering having preventive removal of the right side after several scares. Does anyone have a point of view on this?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

anelia | @anelia | Dec 27, 2022

I am actually happy with my choice.

marciski | @marciski | Jan 4, 2023

Is there any research that discusses why the left side is favored? Mine was also on the left.

anelia | @anelia | Jan 5, 2023

Best decision when with ATM mutation is the double mastectomy.

krislecapit | @krislecapit | Aug 5, 2023

In reply to @marciski "Is there any research that discusses why the left side is favored? Mine was also on..." + (show)

I had mine on right 2018 had double mastectomy and had reoccurrence 2023 in my pectoral and skin layer tumor since I had no tissue. I have the ATM gene. Not sure it favors one left or right. Mine returned in same side right.

Colleen Young, Connect Director | @colleenyoung | Aug 14, 2023

In reply to @krislecapit "I had mine on right 2018 had double mastectomy and had reoccurrence 2023 in my pectoral..." + (show)

Hi @krislecapit. What treatment, if any, are you having now?

zoro | @zoro | 1 day ago

I thought I would join this forum to help me decide as to whether or not to get a second mastectomy and to alos share my breast cancer experience. I have the ATM gene. I got breast cancer on the left breast, had a lumpectomy, radiation and took anastrozole for five years The anastrozole caused serious pain in thumb and hip joints which subsided when I stopped taking the drug. I read that if you have the atm gene, had a lumpectomy and radiation, you have a high risk of return breast cancer in the opposite breast within 5 years (contralateral breast cancer) That happened to me. I had a mastectomy on the new cancer (right breast). No radiation or chemo because it was er positive. The latest medical view is that the radiation treatment only increased the chances of being disease free by 5%. Then I went on letrozole. I got sever dry mouth which turned into permanent salivary glands damage. So I switched to tamoxifen and am comfortable I read that with the ATM gene after breast cancer treatment your chances of being desease free for the first 4 years is 85%, but 45% for the first 11 years. I am leaning towars getting a second mastectomy. Hope this helps others