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My ATM Breast Cancer Story

August 24, 2020

My ATM Breast Cancer Story

By Nikki Houser

It started with a lump

I found a lump in my right armpit. It didn't hurt. I made an appointment for a physical examination and was told it was a cyst. It was recommended that I get a mammogram. It's been a whirlwind since then.

The mammogram came back "inconclusive." This was followed by imaging with abnormal results, an ultrasound and a biopsy. I had Invasive Ductal Carcinoma of Intermediate Grade and my cancer cells were multiplying rapidly. We needed to move quickly. An MRI showed that I did not have cancer in my left breast or lymph nodes.

Genetic testing

I decided to have genetic testing and the results showed that I inherited an ATM genetic mutation putting me at greater risk for early onset breast and pancreatic cancer. My mutation was passed down from my maternal grandmother’s side of the family. I asked my brother to get tested, since this mutation contributes to prostate cancer. When my children are old enough, they will decide if they want to be tested.

Communicate and be proactive

I reached out to my maternal side of the family to inform them of my mutation and to encourage them to talk to their doctors. I talked through my feelings with my cousin, who also inherited our family’s ATM mutation. I participated in a genetic cancer study to be part of the fight to find a cure. I believe this happened to me for a reason and I hope to make a difference to others.

Surgery during the Coronavirus pandemic

After much research, I decided on a bilateral mastectomy. Surgery went well. Results showed that my margins were clean, my lymph nodes were negative and the cancer was gone! Having major surgery during the Coronavirus pandemic was so frightening. The silver lining is that I had no choice but to self-isolate and rest. I am glad I was able to work from home during my recovery. I feel so blessed to have had my surgery the day before the operating room went dark and no visitors were allowed. I couldn't imagine having had to postpone my surgery amongst the fear and worry about COVID-19. 

I found support through FORCE

I am also grateful to have been introduced to FORCE through my genetic counselor. Seeing others with similar stories has helped me come to terms with why all the women on my mother's side of the family died so young. It feels as if my sacrifice has helped "crack the family code.” I am optimistic that if my daughter does inherit my ATM mutation, that science will have found a way to eradicate it completely by the time she is a grown woman. 

My FORCE peer navigator has been a champion for me throughout this journey. Our stories are similar in many ways, yet so different in others. She has been cancer-free for five years and there have been several developments with genetic testing since her diagnosis. I have been inspired by her story and she has learned a few things from my story, as well. It's so nice to have a FORCE friend who understands. I hope that one day we can actually meet in person.

The cancer is gone and life goes on

Looking in the mirror the first time after my surgery was difficult, but knowing that all the cancer was removed made it less shocking. So, that's it! Remission. I grapple with the phrase cancer free, because there are no guarantees. Since my mom passed away at a young age, I have always lived in fear that her fate would be my fate. Now I know her story is very different from mine. I am working with a therapist to help me come to terms with survivorship and its own set of challenges.

One day during the pandemic, we took a long walk in the sunshine and wrote words of encouragement on our sidewalks for passers-by. You are stronger than you know.

Posted in: Stories
Tags: ATM , Mastectomy , DCIS , COVID19

6 Comments

May 12, 2022

Susan Hayes says:
I also have the ATM mutation and after my cancer in both breasts, a double mastectomy was done and expanders put in for implants. Fast forward three years later, I had sharp pains on the left side of my chest. Cancer is back. Had the usual tests and seeing oncologist next week. I live in Canada and no one has heard of this mutation and no studies are done. My parents died just before this so finding out which side of the family it came from is difficult. Both of my daughters don’t have it and cousins from both sides of the family are negative. I feel very alone

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October 18, 2022

Nicole S Houser says:
Since this post I have had my ovaries and fallopian tubes removed. Let's just say it's been a ride. Feel free to reach out to me directly for any questions. I also work for a non-profit called Hope Lives! We can be found @hopelives.org. Much love, Nikki

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December 1, 2022

Lori says:
I am having a prophylactic double mastectomy on Dec 20th and then a total hysterectomy about 6 weeks after the mastectomy. At first the mastectomy scared me worse than the hysterectomy. Now the hysterectomy is more concerning. I was told that HRT could be tricky in someone with genetic mutations and referred to an gynecologic oncologist. That doctor told me that usually no HRT is used. That makes me a bit nervous because I have some close friends who have had major difficulties handling the hormonal changes of menopause. I would love if you could share your experience with me - the good, bad, and ugly of it all. Thanks!

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November 13, 2021

Linda S Dougherty says:
I also had an ATM gene and went through 13 months of treatment, almost all of 2019. I had a double mastectomy with diep flap and immediate reconstruction surgery. I, too, grappled with the words 'cancer free'. I just couldn't wrap my mind around it. I only had cancer in one breast but because of ATM I decided to do both. It's fuzzy to me just what ATM means. I had genetic counseling and at the end of the hour it was still unclear. It does help to connect with others who have similar experiences though. My hospital has a great zoom support group. All kinds and levels of breast cancer. I am also participating in the ABC study, aspirin for breast cancer. Thank you for sharing your story, so much of it rang true for me. We're all in this together.

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September 1, 2022

Susan says:
I have the BRCA1 mutation, and my daughter was tested two years ago. We all celebrated when she didn’t have it. Then she got breast cancer this year, at 24. They retested for 84 mutations related to cancer and she has ATM. The genetic counselor seemed unconvinced that she had bc because of the ATM, but she’s 24! I imagine I also have it.

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October 9, 2020

Sarah Wigley says:
Thank you for sharing your powerfut journey...I too have the ATM gene...been on my journey since 2014..my sister had breast cancer and my grandmother..after a couple years of screening..had preventive double mastectomy in 2017... great full for my knowledge but also causes anxiety..one day at a time

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