Take ’Em Off
In March 2021, during my annual mammogram, my breast doctor told me that the genetics company Myriad launched a new test that was able to compute a person’s breast cancer risk. As the lucky carrier of a CHEK2 gene mutation, I am considered high risk for breast cancer and for the past six years, I have had an annual mammogram, MRI, and screening ultrasound. While I anxiously awaited the results of my quarterly exams, I spiraled, trying to prepare myself for the inevitable. I would think to myself, “this is the year I will get breast cancer”.
CHEK2 is a tumor suppressor gene. If it is not correctly expressed, the body loses a major defense mechanism against cancer. It has roughly the same incidence rate as BRCA1 and BRCA2 and over-indexes among people of Eastern and Northern European descent. Unlike BRCA mutations, CHEK2 does not increase the risk of ovarian cancer but, in males, it can greatly increase the possibility of prostate cancer.
It was pure luck that I learned about my CHEK2 mutation. After watching my best friend’s wife recover from a brutal bout with bilateral breast cancer, I decided to start getting mammograms in late 2014, when I was 38. That year, the doctor hired a geneticist in residence who was offering patients an opportunity to take Myriad’s cancer screener called MyRisk, a multi-gene panel that assesses eight cancer sites including breast, ovarian, colorectal, endometrial, melanoma, pancreatic, gastric, prostate. I figured, why not? So I did. And I tested positive for a CHEK2 mutation.
In the six years that followed, my 18 breast cancer screening exams were inconvenient, expensive, and unnerving. So, when my doctor suggested I take Myriad’s newest test, called RiskScore, I jumped at the chance. If I knew exactly how “high” my “high risk” was, I would know if my treatment plan was appropriate. What if quarterly screening exams were overkill? One vial of saliva and two weeks later, the physician called to inform me that I carry a 50% chance of developing breast cancer in my lifetime. That’s five zero! A coin toss. After a moment of silence, the first words out of my mouth were, “take ’em off”.
Too many of my friends and colleagues have endured breast cancer and the horrific effects of chemotherapy, radiation, and hormone treatment. With each heartbreaking story, I feel more and more detached from my own breasts. I nursed my two daughters, so my breasts have served their functional purpose, so to speak. So, what good were my breasts to me anymore? In the words of my radically candid doctor, my breasts were ticking time bombs.
Within 3 weeks of that fateful phone call, I scheduled what is called a Prophylactic Double Mastectomy with Immediate Reconstruction. Prophylactic implies the procedure is preventative. Today, an immediate reconstruction is rare either because doctors are not trained on the method or don’t have close partnerships with breast doctors. When a mastectomy and reconstruction are performed at the same time, the two doctors need to sync like a ballroom dancing team.
While I scheduled the procedure with unflinching resolve, a few worries crossed my mind. First, would I get to keep my nipples? Since I was not battling cancer and there were no red flags with my nipple tissue (calcifications, pre-cancerous cells), the answer was YES. There would be a small incision below each breast and my outer nipples would remain untouched.
Second, would I still look like me? I was an A cup on a good day and while I didn’t not like the idea of filling out a bikini top, I was having this procedure to save my life and I didn’t want to change my appearance. During my pre-surgical fitting (yes, you try on implants) I asked for implants that were my current size. Trying to hold back a giggle, the nurse told me that I was smaller than the smallest implant. So, NO, I wouldn’t look exactly like me. I giggled too. I went with the smallest implant option and love the results.
A third concern that came up for me was sensation. Would my breasts be forever cold and numb? The implants were to be placed over my chest muscles so there would be very little fat and blood flow to insulate the area. In late 2021, my plastic surgeon was trained on a new procedure called nerve grafting that she was offering to patients at cost because she could not guarantee it would restore sensation. The surgeon would choose a viable nerve that was cut during the procedure and reconnect it to a corresponding intercostal muscle nerve. If it worked, I would regain most of my feeling. It was a now or never decision and I took the $15,000 gamble. For the most part, it worked! The best analogy for how my breasts feel now is like wearing a padded bra. As someone who wore padded bras exclusively, it feels like nothing has changed.
The 7-hour procedure took place in a surgical center adjacent to my doctors’ office. Conveniently, the breast doctor and plastic surgeon are next door neighbors. I paid through the nose to go out-of-network but was relieved not to have to be in a hospital during the height of the pandemic. After the surgery, I was transported to a beautiful recovery center three blocks away. The recovery center resembled a four-star hotel. This was far more luxurious than I needed but I only planned to stay one night and I wanted to do everything possible to remain zen. Once in a while, I reminded myself, it’s ok to splurge on myself.
The post-op experience was far easier and less painful than I imagined. I wore a surgical compression bra for about 4 weeks which was perfectly comfortable. Drains protruded from my breasts for the first 10 days which I needed to empty twice daily. It was a wee bit gross to look at but not painful at all. My ten year old daughter was intrigued and began helping me empty the drains. As far as discomfort, I got by on Tylenol and Advil. The nurses were pressuring me to take my pain management up a notch, as a preventative measure, but I never needed to. With the help of silicon adhesives which I placed over the incision sites, below my breasts, my scars have almost disappeared. I look like me — well, breast feeding me — and my life is dramatically better without stress-inducing quarterly breast exams. I have significantly less than a 1% chance of getting breast cancer, which is an indescribable relief.
My mother lost a short and painful battle with pancreatic cancer at the young age of 64. It took us all by surprise and we were unprepared in every way. I feel beyond blessed to have access to actionable data about my health. Knowledge is power. My husband and kids need me to stick around for a long time and I plan to do just that.
I vacillated on writing this article because I wasn’t sure if it was too personal, too specific, perhaps a bit controversial. But, I preach a lot about vulnerability and this was a chance to practice it. If just one woman gets a genetic test as a result of what I’ve shared, my goal will be met.
The genetic test was a gift. A gift that saved my life.
Special thanks to Dr. Leslie Memsic, Dr. Kelly Killeen, Dr. Lisa Casselith, Dr. Kristi Funk, Papo (Tom) Atlas, Nikki Weiss, Jill Goldstein, Judy Goldstein, Mina Neuberg, Lisa Dubbe-Herbert, my better half Andy Bohn, and my awesome nursing crew Mary and Lucy Bohn. As with everything I do, I wrote this story to honor my late mother Paula Atlas.
