ATM Gene Mutation and Care

Greetings to all, I also have the ATM gene and am newly diagnosed, DCIS left breast. I was going to have a lumpectomy but after finding out that I had the gene and having six family members with breast cancer through out three generations, I decided on a mastectomy which will be next month. It was a hard desicion to make and it is per each individual person’s choice. I am part of the 1 % to have this gene too.

Hi marciski, I have the BRCA2 gene and also had breast cancer in 2012. I decided to have a bilateral mastectomy in 2016 after several MRI and mammo results returned with “probably benign” results. It’s a difficult decision and each person has to decide what’s best for them. I totally respect your decision and will pray for peace of mind and successful surgery. Best to you!!

Marciski, I will be thinking of you. Keep me informed of how things go for you. Prayers for a successful surgery and a quick and full recovery. Hugs to you.

Thank you so much for your advice. I have decided to move forward with the right side. I also realize that insurance changes may happen next year which would put me a terrible position down the road with potentially being denied coverage should a reoccurrence happen.

I did choose a bilateral masectomy. I was diagnosed with invasive ductal carcinoma in the left breast.
I feel if you have had several scares you should listen to your gut. Remove the right breast if that is what you are feeling is right.
My gut ( or my guardian angel 😊) told me to do bilateral mastectomy.
I ended up having a second cancer, invasive lobular carcinoma , in the right breast. It was caught extremely early.
I did have breast reconstruction. I have been so pleased with my plastic surgeon at mayo. His name is Dr Manrique. (Actually i have been pleased with my entire team at Mayo Clinic) My surgeon was Dr Racz. She is an amazing surgeon!
Hugs to you.
No decision is ever easy.

Hi @marciski
Such a good question. I'm tagging a few members, like @violetita07 @bmerxbauer @chamisa @jlms @kruzin who have chosen a bilateral (double) mastectomy, although not necessarily because of an ATM gene mutation (Ataxia-Telangiesctasia mutated).

You may also be interested in reading this discussion:
- Bilateral Mastectomy or not https://connect.mayoclinic.org/discussion/bilateral-mastectomy-or-not/

Marciski, have considered participating in detection and prevention research studies? I was reading about them here: http://www.facingourrisk.org/understanding-brca-and-hboc/information/hereditary-cancer/other-genes/basics/atm.php