National Previvor Day: Elana’s Story
As the anesthesia brain fog slowly lifts and I come to terms with the reality of what I just did, I feel all sorts of emotions but none of them are regret. I am now two weeks post my revision surgery and three months past my initial prophylactic mastectomy and I feel damn good.
In late 2020, amidst a global pandemic and with the guidance of my GYN, I decided to do a hereditary cancer genetic panel that would test for over seventy known genetic mutations linked to all different hereditary cancers. My own mother is a breast cancer survivor. She was diagnosed at 40 years young but we were always told that because she did not have a BRCA mutation that the cancer wasn’t genetic. Being the daughter of a scientist and a survivor, this didn’t seem like the complete picture. One of my best friends had recently beat breast cancer and through her I learned that research continues to uncover new genes that have high correlations to different cancers. I did the genetic panel without any expectations and to my surprise it came back positive for the CHEK2 mutation, something I had never heard of before. I later found out this gene did not come from my mom but from my dad. Had my mother not had breast cancer I wouldn’t have known to test for hereditary cancer genes!
I consulted with an OG medical oncologist (via Zoom because you know…COVID) at the end of 2020 and was told I had three options: 1) Enhanced surveillance every 6 months, alternating between a breast MRI and mammogram/sonogram 2) Surveillance and medication – which I immediately turned down 3) Surgery. This last option was barely touched upon nor were the other types of cancers that are associated with CHEK2. It took me some time for my “go big or go home” personality to kick in, but once it did I took matters into my own hands. Blame the pandemic or whatever, I am not proud of waiting over a year to take action but I am proud of where I am now.
My initial decision for enhanced surveillance came with a lack of understanding what this genetic mutation really meant. I searched social media for others who had this gene and, to my surprise, there was a whole Facebook group dedicated just to CHEK2 “mutants.” I wasn’t sure I wanted to fully dive in because we all know social media can get ugly, but I got a glimpse of what others were experiencing and I was overcome with the feeling turned manifestation “HELL NO, NOT ME.”
I found a well respected local breast surgeon and met with her last summer (2022). I had my first breast MRI and immediately needed a follow up mammo/sono and MRI guided needle breast biopsy. It was almost exactly a year ago that I received a notification that my breast biopsy results were available. I quickly logged into the portal and then froze. Did I really want to read these results? Would this be the day my life changed forever? I held my breath as I scrolled through to see if anything stood out but found myself googling foreign medical terms I didn’t understand. My self-derived conclusion was that my results were “likely benign.” It took a week for my doctor to call me to confirm my interpretation and during this week of waiting I began to think that this is not something I wanted to do every 6 months. (Also what does “likely” benign even mean?) Based on my family history and CHEK2 genetic mutation, the guidance was to alternate between a breast MRI and mammo/sono every 6 months. F* that!!! The amount of time I would spend worrying leading up to my scans and then waiting for results (#scanxiety) would be all consuming. I asked my breast surgeon, who I already did not feel warm and fuzzy about, if we could discuss a prophylactic mastectomy and her response was “That’s aggressive. Call me in a year.” This did not sit right, in fact, it sparked anger in me that pushed me to take action. I was 39, and quickly approaching my 40th birthday, the same age my mother was when she received her breast cancer diagnosis. This gave me more determination and empowerment than ever before to set my own path forward.
In the year between the biopsy and now, I researched, learned and met with 6 different breast doctors (a mix of surgeons and plastics) who all supported my gut feeling that a prophylactic mastectomy was the way to go. My mind was pretty much made up before I set foot in any of these doctors’ offices but I went in genuinely wanting to hear their opinions. Every single one of them started off with “this is your decision” but once they realized I was well researched and confident in my desire to move forward with prophylactic surgery, they all said in their own words that if this were them or a loved one, they would be making the same decision and that they are proud of me.
My next challenge was finding the right team: a breast surgeon and plastic surgeon who worked seamlessly together, supported my desires for reconstruction, had stellar reputations and most of all, had compassion and bedside manner. Believe it or not, it was hard to find both a breast surgeon and plastic surgeon that worked together as a team and checked off all these boxes. I was getting frustrated and stressed that I wasn’t finding a team that felt right to me. When I walked into Dr. Ron Israeli’s office at NYBRA and before even meeting the doc himself, I felt like I was where I needed to be. The consultation sealed the deal. It helped that a former patient just happened to be there and flashed me with her gorgeous Dr. Israeli reconstructed breasts, but his warmth and compassion (and maybe a bit of his perfectionist attitude) gave me the warm and fuzzies I was looking for. I left the office and immediately emailed him to say “You are my guy. When can we book this?”
Once scheduled, the wait for surgery day was torture. Finally, on the morning of surgery I woke up at 4am to prepare and couldn’t help but think, in the words of McDreamy AKA Derek Shephard (Grey’s Anatomy – yes I still watch), “It’s a beautiful day to save lives.” I was rolled into the operating room with a huge smile on my face and naturally a bit of fear. The last thing I recall before drifting off was Dr. Israeli holding my hand and saying “You are making the right decision.”
The initial surgery went perfectly but several hours later I had a scary complication. I am completely fine now and still have no regrets (a story for another day). About a week after surgery I was faced with another email notification that my post mastectomy pathology results were available. This time I didn’t hesitate and my fingers couldn’t move fast enough to log in to the portal. I never once waivered in my decision but there were times I allowed myself to wonder for a moment; maybe that first breast surgeon who told me a prophylactic mastectomy was aggressive was right. Well, one word – VALIDATION. My pathology results showed LCIS, radial scarring and other ticking time bombs for breast cancer. I could not believe it! I literally just saved my own life! It may seem weird to celebrate these results but since my mother had breast cancer over 30 years ago I always believed I would one day receive my own diagnosis. Had I not proceeded with this surgery, I am confident that it was only a matter of time before I would be having a very different conversation.
Knowledge is power! Get hereditary cancer genetic testing. Jscreen.org makes it easy and you can do it in the comfort of your own home with no needles! Stay current on your breast exams, do self-exams and, if you are of the right age or have family history or a genetic mutation, get your mammogram! Oh, and the bonus is I may have just turned fabulous fucking forty but my new tits are in their twenties.
And…. If you don’t know, now you know!