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?

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

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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.

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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.

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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.

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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!!

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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.

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@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.

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@lnduh66

@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.

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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.

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Thank you for all the replies. I had the surgery on the right side and they put a new expander in the left side at the same time since they are going to place the implants above the muscle. The surgery was a disaster. I noticed a few days after the surgery that the expander had moved. I emailed and called the doctor but no-one would take me seriously. I finally was able to get an appointment 2 weeks later, staying in Rochester at my OWN expense. The doctor said yes we need to do another surgery. A week later, I had another surgery to correct the issue as it had moved 180 degrees. You might guess I was very unhappy that my calls were not taken seriously.

I was home for one week and started a fever and then some redness on the breast. I emailed the doctor and they said continue to watch. Over the weekend my fever was 103 and it was bright red. I received a call from the doctor on call and said you need to be seen right away. I cannot see anyone where I live so I flew to Mayo that afternoon and went right to the hospital. After another surgery to remove the expander and 6 days in the hospital it turned out I had two forms of staph and 2 forms of strep. It is only now in late March that I am starting to feel better. I have not been able to work or go skiing after we rented a place.

I went to customer relations and I was told the head of the department did not see any wrong doing. I was now out 2 months of hotel plus meals because no one would listen and you tell me nothing was done incorrectly. Customer relations never returned my calls asking for a further clarification. Needless to say, I am not happy about having to go back and have the implants in May and I will worry about another problem.

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Hi @marciski, I'm saddened to hear of your experience and that your calls to the Office of Patient Experience (customer relations) went unanswered. Please check your private messages. I have sent you a PM to ask a few questions.

I am relieved to hear that after such an ordeal, you are a least starting to feel a bit better. How is the mobility of your arms? Are you able to do mobility exercises?

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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.

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