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Education > Our Blog > Finding Hope on the Other Side of Surgery After Learning of my ATM Mutation
Finding Hope on the Other Side of Surgery After Learning of my ATM Mutation

October 15, 2020

Finding Hope on the Other Side of Surgery After Learning of my ATM Mutation

by Cindy Townsend

My story begins when I was 40 and I had my first mammogram. I was forced to write, "NO FAMILY HISTORY, ADOPTED" on the form that asked for my family medical information. After going back to work, I had an urge to look up my biological mother's name on the Internet, as I have done countless other times with no results. But this time, something came up: her obituary. Months later, I found out from my biological sister that my mother fought a courageous, four-year battle with breast cancer but sadly died at the age of 52. Coincidently, my doctors were offering an affordable genetic test at that time, so I signed up. After genetic counseling and testing, I found out that I have an ATM mutation. I had never heard of it, and I learned that with a strong history of family cancer, I was at a very high risk.

Making a decision and reaching out to FORCE

My genetic counselor suggested I see a breast surgeon to understand my options. At my appointment, my surgeon gave me two choices. One was to follow a maintenance plan of yearly mammograms, MRIs and doctor visits. The other was a double mastectomy with reconstruction. I almost fell off my chair. I wasn't expecting to make such a difficult choice so soon. But after plenty of research, talks with my family and considering my odds of getting breast cancer, I decided to have bilateral DIEP flap surgery with reconstruction. That was when I reached out to FORCE for support. I was thrilled to see that they offered a program where you could talk to other women who might also carry the same mutation and/or have the same type of surgery. It was so comforting to speak with women who went through what I was going through and to see that they were doing just fine. I was able to ask questions and learn what the road ahead of me might look like.

Even better on the other side

I'm happy to say I made it through my surgery and reconstruction with flying colors! This journey has changed me for the better. I learned so much about myself through this process. I wouldn't change one thing. I decided after I healed that I would volunteer with FORCE to see if I could provide the same comfort to others that I received before my surgery. I really enjoy talking with women and letting them know that you can come out of this on the other side better than you were before. And that it’s all going to be ok.

Posted in: Stories
Tags: ATM, Risk-reducing Mastectomy

11 Comments

March 11, 2021

Christie says:
Just diagnosed @ 60 with ATM & Chek 2 this week. I also am adopted and my paternal half sister died of pancreatic cancer 2 months after her diagnosis. I have chronic pancreatitis, now this. Your story is wonderful. Be well and thank you for sharing.

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February 25, 2022

Christine Helm says:
I am so happy to hear that you are doing well. I am searching for a group of women that I can also talk too. How do I get into contact with a group?

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April 22, 2022

Alison says:
Hi I just found out I have the ATM gene mutation. I am totally freaked out. I am 58 and always healthy. My mom died of fallopian cancer aged 65. I reminded my gyno of this in a recent exam which sent we on this journey of genetic testing and doctor appointments. Honestly right now I’m terrified

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November 19, 2020

L Ronchetti says:
Thanks for sharing your story! I also have the ATM high risk for breast cancer, but wasn’t screened until after mine was found in a routine mammogram. Now I have to get the news out to the rest of my family. Knowledge is power. Currently I am recovering from my double mastectomy, and am so gratefulyo have caught it small and early. Best wishes for your future health!

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January 7, 2021

Lisa Hurley says:
I found out about two weeks ago that I have the ATM gene mutation. I just had my genetic counselor meeting and she told me I am at 68% high risk for getting breast cancer. I have to make my appointments with the breast surgeon tomorrow to discuss my options. Are you glad you opted for the operation you did? Did your doctor recommend that? Thanks for any info

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January 8, 2021

Melissa says:
I was recently found out I have the ATM mutation. I’m 37. Would love to chat. Thanks.

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May 10, 2022

Laura says:
I too, just found out I have the gene mutation at 37. I would love to connect with some you.

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October 7, 2021

Sarah says:
Cindy, thank you for sharing your story. You are very brave. I am facing the same situation with an ATM mutation and family history as well as a scheduled double mastectomy. Please email me with any advice you have for me. I don’t know anyone with an ATM mutation who has had a prophylactic double mastectomy.

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October 29, 2021

Tracey says:
I spoke with a genetic counselor this week about the ATM gene. My risk of reoccurrence is 35% for breast cancer so I am not considered high risk but there is a risk. I consider myself in the "gray" area for deciding on yearly mammogram/MRI or considering bilateral mastectomy. I had breast cancer in 2013 and had a lumpectomy and 6 weeks of radiation and 5 years of Tamoxifin. Anyone have a similar experience and could talk with me about why you made the decision you did. Thank you.

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March 26, 2022

Debbie says:
Thanks for sharing your story. I tested positive for ATM gene as cancer has taken my father and grandfather. Genetic counselor is suggesting several risk management surgeries. I’d love to chat with someone that has been in this similar situation.

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April 22, 2022

Alison says:
Debbie I’m in the same situation as you Meeting with breast surgeon next week to discuss This is scary I’d love to chat

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