Sunday, August 2, 2015

BRCA 1

I remember watching Oprah many many years ago about a mother and her grown daughter who both opted to have preventative "skin saving double mastectomies".  Something told me to file this away for later because I would probably need to remember this information.  I was right.

Fast forward to October, 2012.  I was 34, my husband and I were temporarily living in an apartment in Franklin, TN (our house sold and we were in the process of building our dream home), and we had four young children (ages 5, 4, 3 and 6 months).  I was just your average stay-at-home mom, trying to stay sane in the insanity that was my life.

I grew up in Florida and my Mom was still living and working in my hometown. My husband and I were constantly begging her to retire and move up to TN and live with us. She ha finally agreed to do it and live with us once our house was complete. I'm sure we were chatting about that on one of our many daily phone calls when she told me that she went ahead and had herself tested for the BRCA genes.

As far back as I can remember, my Mom feared getting diagnosed with breast cancer.  Her Mom and all of her Mom's sisters passed away from some form of breast or ovarian cancer.  That strong family history of cancer, along with our Ashkenazi Jewish genetics, puts us on the scary side of the statistics.  After my Mom had a questionable mammogram, and with a borderline neurotic daughter (me) hounding her, my Mom decided to get tested for the dreaded BRCA 1 and 2 genes.  She was positive for BRCA 1.

I called my OBGYN the day we received my mom's results to schedule my own test. Then I began my research. I knew what I would do should I test positive. There was not a single doubt in my mind. Part of me even thought testing positive could be a blessing for someone as worrisome as me. I know how badly that sounds but here is my thought process: should my results come back positive, my insurance would completely cover a preventative bilateral (double) mastectomy, reconstruction and a hysterectomy. I could reduce my risk to less than 10%. If I tested negative I could continue to worry and worry about someday, maybe getting breast cancer. And trust m worried. See, I'm that person who hears symptoms of an illness and immediately I run to my computer to self diagnose. I had already had a mammogram and it was such a stressful experience for me. Not the mammogram itself, but the waiting for a call with good or bad results. At least if I tested positive I could take a major step to reduce my anxiety.

The test my mom had consisted of a blood draw. Mine was as simple as swishing mouthwash and spitting it into a test tube three times. That's it. I completed minimal paperwork for it, and the rest was up to my doctor's office. It took around three weeks for my doctor to call with the results.

Here is my first bit of advice. Make sure your doctor is one who will call you. Make sure he or she will sit with you in person or on the phone, and answer each and every question of yours that comes to mind. I remember the exact moment that mine called. I was in the waiting area of my daughter's dance studio chatting with the other mothers while our girls were in class. My doctor said, "Kari, your results came back and you are a carrier of the BRCA 1 gene. Here's what that means......"

My doctor and I had already spoken at length regarding what I would do should results come back positive. She knew I would elect to have both the bilateral mastectomy and a full hysterectomy.  I scheduled a sit down with her to discuss the hysterectomy and she referred me to a breast surgeon and plastic surgeon. I hung up and started my journey.

I took my BRCA test sometime in late September. I received my results in mid-October. My first surgery, the double mastectomy, was December 13. I realize this timeline seems crazy, but for me it was ideal. Once the results came in I could not wait to have everything behind me and just continue life as the new me. For me, anxiety always begins when I'm anticipating the unknown. Until this point, my only experience as a patient inside of a hospital was when each of my children were born. Even then, for such routine medical events, I have NO doubt that the nurses involved shake their heads and laugh at the ridiculousness that was me.

I am a complete wimp. I'm overly modest and somewhat immature. There is a long list of words that you will never hear me say. I can't even hear them without blushing. I get lightheaded every time I have a blood draw. Numerous times I've even passed out after one. I am a natural redhead and I prove the anesthesia requirements for us Gingers to be accurate. We require approximately 20% more anesthesia than the average person. I tell you all of this so you can see I would never just jump onto an operating table at the suggestion of one doctor. I would, however, after learning all about what being BRCA positive means.

When you discover that you're a carrier of the BRCA gene, it slaps you with the reality that a breast cancer and/or ovarian cancer diagnosis is a very real possibility in your future.  While not all breast cancer patients have this faulty gene, nearly 87% of us with BRCA 1 and/or 2 WILL at some point be diagnosed with breast cancer.  I once heard that only 5% of diagnosed breast cancers are BRCA positive women, yet nearly 88% of BRCA carriers develop breast cancer. Our ovarian cancer odds are slightly better, somewhere near 50%.  While these statistics aren't a guarantee that you will develop cancer, my mom and I simply weren't willing to risk it. We both could have chosen to do nothing and have our doctors closely monitor us every six months. If you know us, it was no surprise that we both opted for and scheduled our surgeries for as soon as humanly possible.

My Mom's double mastectomy was on the Tuesday before Thanksgiving 2012 in Orlando, and mine was December 13, 2012 in Nashville.  I can't even count the number of people who considered this timing to be "insane" or "ridiculous".  I heard from so many, "Why don't you just wait until you get moved into your new house, then deal with it?"  "Your kids are so little! Why now?" "You and your mom should just wait until after the holidays, stagger your surgeries more so then you can help each other out."

Why now?  Here's why:
- If I'm given the chance to do anything, and I mean anything, to prolong my time here on Earth with my loved ones, sign me up.
-Is there EVER a convenient time to do something like this?  As far as I was concerned, get any cell out of my body that could turn into cancer at any given second.  I felt like a ticking time bomb, and I wasn't going to wait around.  Once those cells turn into cancer, it would be a whole new ball game.
- My mind was already made up but when two of my doctors said "if you were my daughter, I would ask that you choose to do this ASAP." I did.

I fully understand how deciding to do this could be a struggle. Many people would rather just take their chances and let whatever will be, be. I also hear the concerns of those who feel they might mourn the loss of parts of their female anatomy. This is certainly not a decision one can make lightly. I get that, trust me, I do. I am in no way trying to persuade anyone to make a decision one way or the other. I just want to tell the story about a mother and her grown daughter who made the same decision, saving both of our lives in the process.

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