ATM Gene Mutation and Care

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

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

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.

Best decision when with ATM mutation is the double mastectomy.

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

I am actually happy with my choice.

Hi there,
I have the mutation of ATM and I don't have a cancer. However, I had the double mastectomy for my protection.
Don't forget that people with ATM gene have also high risk of pancreatic cancer.
4 months ago I just had pancreatectomy as I had a benign cyst that was growing fast for the last two years. However, I am still having a normal life as my pancreas is still able to produce enough insulin and enzymes because I am not diabetic and don't have in the family diabetic people either.
Tks.

Yes, my pain or discomfort was most on the left side too.

I have the ATA mutation and I don't have a cancer. However, a year ago I had double mastectomy with reconstructive surgery...just for peace of mind.
It's totally your decision.
I hope this was helpful.
D
Thanks

A quick observation. Seems like I am hearing a number of left breast cancers. Mine was also left.