ATM Gene Mutation and Care

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

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.

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.

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.

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!!

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.

@zinath123 How are you doing? Did you go ahead with the surgery. I have the ATM gene mutation also and went ahead with the bilateral in September of 2016. Have not run across too many with this, but then again, they did not usually test for this or patients did not pursue testing. I hope things are going well for you. It does get better.

I am well, at the last minute I decided on just left sided mastectomy. I am about half way through reconstruction process. (Expanders then final saline). For me it was a good decision at the time. I may consider right side mastectomy in future. But at the time was glad I had use of right hand because. The people who I thought were going take care of me got sick ( my mom and hubby were both hospitalized while I had surgery) and I had to be self reliant. All is well now. I hope you also are healing well and thanks for checking on me.

I do not have ATM but have BRCA2 and had a bilateral prophylactic mastectomy at age 25. I had family members die of breast cancer and didn't want that hanging over my head. You do what is best for you.

I do have the mutation in ATM too.. All my test - MRI, ultrasound, mammogram are negative. However, I have a pain in my left breast for 3 years, and now for 4 months in my other breast too. I decided to go for double mastectomy as the pain stresses me out so much, and I cannot live every day in fear. My health card covered my surgery and the reconstructive surgery and I m very happy about it. Me and my husband have this ATM gene, therefore my son carry the AT syndrome who we lost 21 years ago when he was almost 18 old. I remember when I was reading some info about my son's AT Syndrome was saying that the mothers have a high risk of getting breast cancer. I was wondering how I can be connected to my son's AT Syndrome. I shared that with my breast specialist doctor and she sent me to a genetic doctor. And at 60 years old I got to know that I have the mutation in ATM gene.
Please, ladies if you have already breast cancer in early stage and the doctor recommended you to have a double mastectomy just go for it....That's the best way to get rid of it.
By the summer I am going to have my surgery and I am very happy about it.
My best wishes to all of you, you are strong ladies and I know that you are going to win in this game. Never give up!!!

Canada