It Happened To Me: I Had A Preventative Double Mastectomy

We all have something in our genetics that makes us susceptible to some sort of illness. Maybe it’s cancer, maybe it’s diabetes, maybe it’s thyroid issues. I am lucky and unlucky that I know what my time bomb is.

Jan 23, 2013 at 4:00pm | Leave a comment

The story starts with my mother.  

When I was 4 years old, my then 37-year-old mother was diagnosed with inflammatory breast cancer. Not only was she incredibly young, but inflammatory breast cancer is the most rare and most aggressive form of breast cancer; the statistical survival rate is around 10 percent.  

But against the odds, she survived. I already knew that I had other female relatives who had died from cancer but I didn’t have a lot of details about their diseases.

Since my mother was sick at such a young age, I started regular surveillance at 21. Like most young people, I felt invincible and it was easy to push the possibility of cancer out of my mind. In my mind, 37 was anciently far away and I had a million other things to worry about. My once-per-year gynecological exams were uncomfortable, but easy to forget.

Perhaps because I was so young when my mom was sick, the seriousness of her illness was lost on me. I remember mom wearing wigs and being tired, but my little life was hardly affected.

I spent the next several years having my annual checkups. When I moved back to New York City in 2009, I was 26 –- mature enough to enroll in Memorial Sloan Kettering’s surveillance program. Having one female relative with breast cancer raises some flags. Having a mother diagnosed at 37 is a giant red one.

My doctor suggested that I look into getting tested for the BRCA genetic mutation. BRCA genes are responsible for tumor suppression in breast and ovarian tissue. A mutation means that once tumors start growing, they can’t be suppressed. Being a carrier of this mutation translates to a statistical likelihood of getting breast cancer of “up to 87 percent over one’s lifetime.” And there’s even more fun. It also translates to “up to 50 percent incidence of ovarian cancer.”  

To put that in context, the average incidences of breast cancer and ovarian cancer in the female American population are 12 percent and 2 percent respectively.

Not just anyone can be insured for the egregiously expensive genetic mutation tests. You have to have a certain family history of cancer to have the test recommended, and then you have to go to a genetic counselor for a session (after which you decide whether or not to get tested).  

I didn’t understand at the time how serious the emotional ramifications were of knowing one’s risk, but I was convinced that I didn’t carry this mutation. Everyone I read about having the mutation had several female deaths in their families due to breast and ovarian cancer, and I had just my mother’s case (in which she survived).

My assumption was further supported by the genetic counselor’s calculation of the likelihood that I had the gene (7 percent). I walked out of the first counseling session convinced my mother’s cancer was a fluke and my genes were perfectly fine.

Still, I decided to get the test. I had recently gotten married, and wanted to know in case we decided to start a family. I didn’t think I had the gene, so why not make sure with a simple blood test? I planned to get my negative results and go on with my life as usual. I went in for my results confidently, even letting a grad student sit in for my counseling session. I will never forget the words that changed my life forever.

“I regret to inform you, you are a carrier for the BRCA1 mutation.”

I completely broke down. I used an entire box of tissues. It wasn’t supposed to be me. I went into my results session as a shiny, life-conquering newlywed, and left feeling like a lemon. No matter how ready you think you are to find out details about illness and your own mortality, nothing can prepare you.

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A Simpler Time.

BRCA mutation carriers are typically offered three options for medical care:

Surveillance: Mammograms, Sonograms, Clinical Breast Exams, and MRIs scheduled throughout a year. These tests won’t stop breast cancer from occurring but they will catch it at the earliest possible stages if it does occur.

Chemoprevention: Taking hormone-suppressing drugs like tamoxifen for 5 years, which can lead to early menopause symptoms. This is generally recommended more for older women who are past childbearing years.

Prophylactic Surgery: Surgical removal of breast tissue and/or ovaries. These surgeries can reduce risk of these cancers to 2 percent.

I initially chose surveillance. That was the route I had pursued prior to finding out that I had the mutation and it seemed comfortable and familiar. I didn’t want to make any rash decisions.

But as I was going through my mammograms and sonograms and MRIs, something was different. The feelings of fear and anxiety that I had pushed away in my early 20s were now real and quantifiable. I felt like I had a ticking time bomb inside of me.  

Every perceived lump, change in tissue consistency, or pain in my breasts was suddenly breast cancer. Every bite of food I put in my mouth led to internal questions about which foods cause cancer. I felt like if I tripped and fell the wrong way, my body would react by creating a tumor.

The usual recommendation for surveillance is to space out clinical breast exams, MRI’s mammograms, and sonograms throughout the year.

My first year’s schedule of doctors’ appointments looked like this:

♣ January:  Clinical Breast Exam (Breast Doctor)

♣ March: MRI

♣ July: Clinical Breast Exam (OBGYN)

♣ September: Mammogram & Sonogram

♣ October:  Clinical Breast Exam

My actual year looked like this:

♣ January:  Clinical Breast Exam (Breast Doctor)

♣ March: Anxiety for 2 weeks before breast MRI

♣ March: MRI. Hold still for 45 minutes face down while a large noisy machine scans your breasts for anything suspicious

♣ March: Receive call from breast doctor that my MRI looked suspicious and they need to biopsy the suspicious area

♣ March: Freak out, cry, and schedule MRI biopsy

♣ March: Spend 3 weeks in anxiety because an MRI biopsy is not available for 3 weeks 

♣ April: The suspicious spot turned out to be just a hormonal fluctuation.

♣ July: Clinical Breast Exam (OBGYN)

♣ September: Mammogram & Sonogram

♣ September: Receive call from breast doctor that mammogram was inconclusive.  They need to perform another one to get a better look.

♣ October: 1 month of anxiety between mammogram 1 and mammogram 2.

♣ October: Clinical Breast Exam

♣ November: Happy Birthday to me!  Here’s another mammogram.  And some anxiety.

♣ December: Breathe a sigh of relief that I made it through the year and brace myself to do it all over again. Every year. Until they finally find the inevitable cancer.

The emotional toll of all these tests was more than I expected. I cried a lot. I was angry. I spent hours on the phone arguing with my insurance company to have my MRIs and mammograms covered (they don’t make it easy for someone under 40).  

Some women can emotionally handle the unknown, but I don’t like any loose ends, especially health issues left untreated.  I like to check things off lists, and I wanted to check off the breast cancer box.

I want to live in a world where I could move to Paris for a year without thinking about the medical ramifications. I didn’t want to let this mutation affect my quality of life. But while I didn’t yet have physical cancer, the idea of cancer was eating away at me emotionally. There wasn’t a minute where it didn’t cross my mind in some way. BRCA was taking over my entire life.

I made the hardest and easiest decision of my life. I elected to have a prophylactic bilateral mastectomy.

Through Sloan Kettering, I found a team of amazing surgeons who performed the mastectomy and reconstruction. The surgery aftermath was the most painful experience of my life. Rehabilitation was awful. I couldn’t lift my arms past my shoulders until after several weeks of physical therapy exercises.  

I woke up in the middle of the night in excruciating pain when my Vicodin had worn off. The anesthesia made me nauseous. But that all passed with time. And though I have a few battle scars, they look fantastic.

After I had physically healed, I began an emotional and lifestyle transformation. I looked at how I ate and how I took care of myself. I searched for answers in the form of diet books and exercise classes. I tried meditation. I began to eat based on how it made me feel rather than how it tasted. I bought a guitar that I always wanted to learn how to play. I learned about the importance of sleep, relaxation, and stress reduction.  

I am not perfect –- but I am a work in progress and BRCA kick-started my really living.

The truth is we all have something in our genetics that makes us susceptible to some sort of illness. Maybe it’s cancer, maybe it’s diabetes, maybe it’s thyroid issues. I am lucky and unlucky that I know what my time bomb is. BRCA is not a gift, but it has made me stop to think about the kind of life that I want, how I take care of myself, and with whom I want to surround myself. It’s made me think about what goes into my body and how my lifestyle affects my longevity. It’s made me want to live the life I want to live and not just accept the path of least resistance.

Some people who have learned my story have used the words “radical” and “controversial” to describe my choices.  I have also heard the words “brave” and warrior.”

I don’t know if any of those words are true, but their opinion does not affect mine. Women who have my condition are called “Previvors.” We survive a predisposition to cancer, which is a circumstance that presents unique physical and emotional challenges.

I know that I chose something extreme in order to live without fear. I chose joie de vivre over vanity, and I am proud of it. BRCA has been an eye opener and a catalyst for change that led me to take control of my health and my life.  And for that, I am grateful.