PUBLISHED: 15th October 2020
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.
18 Comments
March 11, 2021
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.
Christie
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December 2, 2023
Hi all, Thanks for sharing. I am 47 and have DCIS and ATM. I had a lumpectomy and re-excision...just waiting for results from Pathology. I am afraid to schedule the mastectomy and reconstruction because I live alone and don't have local family/friends with the capacity to help. Looking to learn more about resources and what kind of support I'd have to line up before scheduling the big surgery.
Nanette
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February 25, 2022
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?
Christine Helm
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August 15, 2023
I was tested in 2017 after my 21 yr old daughter was dx with breast cancer and ATM gene I was found to have ATM also. Two yrs later at 57 yrs old I was dx with my first breast cancer ILC stage1 neg. nodes Two yrs later I found lump in armpit and was positive for 7 nodes from the same cancer. I was told at that time ATM only increases your risk 20% and that they didn't know much about this gene mutation. I was never told or offered to have a mastectomy despite having a strong family history, mother dx at 42, daughter dx at 21, aunt and a half sister. I see a lot of women getting mastectomys I thought Drs only recommend this for braca positive
Rhonda
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April 22, 2022
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
Alison
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November 19, 2020
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!
L Ronchetti
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January 7, 2021
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
Lisa Hurley
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August 26, 2022
Anyone needing support with questions on ATM, please reach out in FORCE and you can speak to someone through our volunteer Peer program. We will be happy to speak with you!
Cindy Townsend
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January 11, 2023
Hello - my mom was recently diagnosed with breast cancer and I also have the ATM gene mutation. Before knowing that - I had tried to ask for a mammogram ( I am a nursing student and currently have medicaid) but was denied because I was too young. Is there anyone you would recommend to reach out to with FORCE to help me navigate getting screened?
Ashley Runco
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January 8, 2021
I was recently found out I have the ATM mutation. I’m 37. Would love to chat. Thanks.
Melissa
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May 10, 2022
I too, just found out I have the gene mutation at 37. I would love to connect with some you.
Laura
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October 7, 2021
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.
Sarah
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October 29, 2021
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.
Tracey
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January 17, 2025
Hi! Thank you for sharing. I am 47 and I found a lump in my right breast and after doing genetic testing I learned that I have the atm gene mutation. There is not any family history of breast cancer but pancreatic and prostate cancer run in my family. I was at high risk so my surgeon suggested a double mastectomy. I have been through chemo, radiation, and am now on endocrine therapy. I am doing well, but am definitely concerned about reoccurrence especially because of the mutation.
Catherine Stevenson
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September 30, 2022
Hi! I'm 38 years old and i also recently found out that I have the ATM gene mutation, and am going need a double mastectomy because I'm at high of breast cancer again. Yes I have breast cancer and already went through chemo just waiting for my surgery..
Shillan adam
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March 26, 2022
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.
Debbie
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April 22, 2022
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
Alison
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August 29, 2024
I am 50 years old and was diagnosed about 2 months ago with invasive carcinoma and then tested positive for the ATM (same exact marker as my mom - who does not have breast cancer). I've been healthy all my life so this was definitely scary how fast it went from "we caught it early" to "we recommend a double mastectomy." I had the surgery 3 weeks ago and was thankfully lymph node negative. I wish I would have skipped the expanders and gone right to implants but I guess they don't know how much skin they can save. But expanders are very uncomfortable and they will be here for at least 6 months before I can then get the second surgery to replace them with implants. The oncologist likes that my tumor cells are Estrogen and progesterone receptive because Tomoxifin is an option for 5 years. We are waiting on the Oncodx report that will basically make a much more detailed recommendation about treatment based on all of my markers. For all of those just diagnosed and looking for information, I can tell you it is a very frustrating journey. There is not much known about the ATM mutation and because of this, many just want to treat it like BRACA right now (because they don't know what else to do). There are people doing research to try and see what your risks are (which cancers and how high a risk) based on which specific ATM marker you have. What I've learned is that someone who has an ATM mutation but a different marker (the number correlating to where your mutation has occurred in the gene sequence) can have a totally different risk analysis (and totally different treatment regimen) than my ATM marker. While I have breast cancer, the one database I found seems to show my marker has been primarily reported in cancers of the lung, pancreas and colon. So I feel like I have a ticking time bomb of what's to come. The only good news is knowing that I have this marker will put me into a lifelong surveillance journey where I feel like I have better odds of catching any other cancer early, wherever it decides to rear its ugly head, and early detection will always increase your odds of survival. I am only 2 months into this journey and I can say that I've learned so much about genetic mutations, how large the breast cancer survivor community is, how to read a path report, how to research at 2 am when you can't sleep, how to laugh after a double mastectomy without it hurting too much, how to tell someone I have breast cancer without crying (I'm still working on this one), how to appreciate family and friends, and how to be thankful for a husband who literally carries you, washes you, cooks for your, takes care of the kids for you, and doesn't complain..... it is all so humbling for a very independent strong lawyer to be brought back to the basics and see what I've missed all along. And while it is perfectly normal and human to be sad, cry, be angry, be scared at everything you are going thru, I urge you to see the beauty in it.... that it truly does make you refocus on what's important in life. Love, hugs and well wishes to all you ladies!
Jennifer
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