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ATM Gene Mutation and Care

Breast Cancer | Last Active: Dec 21, 2025 | Replies (27)

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Profile picture for zoro @zoro

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

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Replies to "I thought I would join this forum to help me decide as to whether or not..."

@zoro, very helpful. The decision making when diagnosed with the ATM gene is complicated and very individual. To help make decisions, it is useful to hear what others have considered to make their decisions.

Have you decided to get the second mastectomy or are you still considering?