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Living Life to its Fullest with an ATM Mutation in a Coronavirus Pandemic

June 11, 2021

Living Life to its Fullest with an ATM Mutation in a Coronavirus Pandemic

by Sharmila Sandhu

I have always been a private person and kept personal issues to myself and a small, insulated group of friends. Therefore, when I received my breast cancer diagnosis in summer 2020, I didn’t want to burden others. I had no idea how and with whom to share the news, much less how to process it myself. After discussing with my husband, I took the “business as usual” approach that I had used all my life with challenging news: keep moving, don’t let it slow you down, keep it in a corner of your brain and deal with it just as you would deal with any other task. While in some ways my compartmentalization was helpful, that approach was not going to be good for the emotional health and well-being of my spouse or my 12- and 9-year-old children, whose lives also changed the second that I heard the word “cancer.”

Learning and accepting the realities of ATM

The news hit me hard. I wasn’t completely shocked because I had a family history of breast cancer, and I knew that I carried an ATM mutation. I lost my sister to the disease three years earlier. She wanted me to know my status so I could take action to protect myself and my children. That is the greatest gift one can give. My positive genetic test years earlier was my wake-up call to be vigilant about annual screenings, mammograms and breast MRIs. I had ritualistically maintained these screenings without an abnormal finding.

Like BRCA, ATM has troubling associations with breast and other cancers. Although researchers are learning more about this gene, the data is presently limited. More people are needed to participate in studies so that we can better understand ATM and other high-risk genes. As a lawyer and researcher, I spent significant time learning about ATM, including consulting with genetics experts. FORCE is integral in helping patients and caregivers with that effort.

Yet, it was still surprising when an abnormal finding was flagged on my mammogram, which triggered a diagnostic mammogram. I exercised regularly, tried to eat nutritiously and had consistently been in good health. I was reassured that this sometimes happens, and told not to worry. Due to the placement of the abnormality, which appeared to be microcalcifications, I needed a stereotactic biopsy to pinpoint the problem area. About a week later, my radiologist called to tell me the biopsy showed ductal carcinoma in situ (DCIS).

Now what?

I quickly learned that I had a decision to make. I could have the small area of DCIS removed with a lumpectomy possibly followed by radiation or have both breasts removed. Even though DCIS was only in one breast, unilateral mastectomy is not recommended for someone like me who is at high risk. For most women who don’t have a genetic mutation or a family history of breast cancer, the decision might be easier. They would likely choose the less invasive option, preserving their breast tissue and moving on with regular screenings. For me, the risk was just too high after seeing my sister suffer. So, my attitude was, just take my breasts. I opted to have a bilateral mastectomy.  

Screening and surgery during the pandemic

We were approaching the sixth month of the national coronavirus pandemic. Like so many others, my family remained almost entirely quarantined with my children in full-time remote schooling. My mammogram and subsequent biopsies were nearly the only times I had left my home since March. I was extremely anxious about the surgery and open about my fears with my healthcare team. I was especially fearful about having to walk into the surgical waiting room and pre-op alone because family members were not allowed due to COVID-19. Having a caring, empathetic team was critical for my preparation. The oncology and surgical team answered all of my questions about what to expect regarding the operation and recovery, including anesthesia, pain, drain care, post-op medications, recovery timeframe and many, many other questions. I was as prepared as I could be and strongly supported by my family, friends and FORCE connections. The surgery was successful, and with my final reconstruction procedure recently completed, I can close this chapter of my life. I can move forward knowing I made the best decision for my family and me. I look forward to continuing to live life to its fullest, while still knowing that I must stay vigilant about my ATM mutation.

Giving thanks

Nothing puts life into perspective like getting a cancer diagnosis. I give thanks for my health and my life. I am grateful for my spouse, family and close friends who showed up for me every day. I give thanks for the volunteers in the FORCE Peer Navigator program who spent hours on the phone with me. I recently completed Peer Navigator training and began the process of paying it forward. If I can help even one woman feel more understood and informed or prompt her to obtain the mammogram or other cancer screening that she needs, my experiences will have been worth it. Each day is a gift. 

Posted in: Stories
Tags: ATM, COVID19

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