Ta-ta to the tatas. Hello to the hooters! This is the mantra that I have been saying to myself, out loud on occasion, since I decided to have a prophylactic bilateral mastectomy with reconstruction.  I repeat this mantra as a way to lighten my mood when the thoughts in my head become a little too heavy; or a way to make my three teenagers laugh when there is fear in their eyes; or a method to ease the worry lines that I can clearly see on my sweet husband’s face as he tries to be brave for me.

This little mantra comes with a story.  It’s my story and one I believe is important to tell.

It’s all about genetics

In the spring of 2019 my parents called saying that my dad, who was being treated for metastatic colon cancer, had a genetic test done to help better understand how to treat his cancer.  The testing uncovered a genetic mutation in his ATM gene.  The geneticist strongly suggested that my brothers and I get tested for the mutation as well.  Each of us had a 50% chance of inheriting this mutation.

Since there was a lot going on with my kids (that’s a blog for a later date), and summer was coming, I didn’t want to cloud my mind with the test and its possible results because, you know that feeling you get in the pit of your stomach, when you know something is wrong and there is no denying it?  Well, that was the feeling I got.  I had a deep feeling in my gut I was going to test positive for this mutation. So, I decided to wait until the Fall, after the kids were back in school and we had enjoyed vacations and summer relaxation.

Genetic testing

I went for genetic testing at a well-known cancer center the day after my kids, my oldest a Senior and my twins eighth graders, went back to school in September. I was early for my appointment and really nervous. The counselor was on the phone in her office when I arrived, so I sat, waited and people watched from a chair that faced the entrance of the facility. As I watched people coming in and going out, my stomach churned, my heart raced, and I had an acute sense of sadness and trepidation wondering what each person’s story was and what mine might be.

Once the counselor finished her call, she called me back to her office, introduced herself and started the meeting by going over the family history packet I had sent her weeks before.  It was filled with names of family members, some I knew, some I didn’t; their relation to me; whether they had cancer or not; if they had cancer what type; whether they were alive or deceased; if they were deceased at what age did they pass and from what.  It was a lot of information to process and wrap my brain around.

I hadn’t realized until I had taken the time to fill out the packet with my parents weeks before, how many of my dad’s cousins had had breast cancer. I knew my aunt had been diagnosed with it in her 60s and beat it. But that was about it.  I don’t think any of us ever gave it a second thought until this gene mutation was uncovered.

After going through the packet, the counselor and I discussed the specific mutation and what it would mean if I had it.  I told her that I already knew the results and this was just to confirm what I already knew. I remember her smiling saying, ‘there is no way you could possibly know that.’ Call it female intuition, call me a witch (joking), but deep in my gut, I knew I did.

After our hour-long discussion, the counselor took me up a flight of stairs to a nurse waiting to draw a vial of my blood. As I sat in the chair and the nurse tied the rubber band around my upper arm, I remember thinking, ‘please let my gut be wrong, please don’t let me have this genetic mutation’. And as quickly as the thought passed through my mind, I felt the needle leave my arm and a Band-aid put in its place. I got out of the chair, walked down the steps and out into the sunshine, with a black cloud hanging over my head.

Your gut is always right

Two weeks later, I got a call from the genetics counselor.  She was very quiet and asked me if I was driving.  I told her I was not and said, ‘I know. I tested positive.’ We scheduled another appointment for me to come in so she could instruct me on my next steps.

Those next steps included getting the name and number of a breast surgeon and counseling me on what the results meant. Although this mutation increases my chances of getting a few different types of cancer, breast cancer was the one that showed the highest percentage of risk based on not only the mutation, but family history.

Options, but really no option at all

My husband and I went to meet with the breast surgeon in early October. Heading into the office we were nervous, but not overly concerned.  We thought it was a simple visit that would ultimately result in him telling us that I needed to go for more frequent testing and nothing more.

After an examination, discussion of my family history and a look at the breast imaging I have had over the years, we went into a small office and discussed my options. The surgeon was very serious and told us that because of the mutation and my family history, I am 50% likely to get breast cancer in my lifetime. At that moment, the world stopped.  I was stunned. I could feel myself get a little queasy and I went hot from the top of my head to the soles of my feet. Fifty percent. Fifty, fifty shot. The odds were not in my favor.   Leaving my chance of getting breast cancer up to what would amount to a coin toss, didn’t sit well with me.

He then gave me my options.  I could either go through a rigorous schedule of screenings every six months for the rest of my life that include a breast MRI and then six months later a mammography and ultrasound, with professional breast exams thrown in in between and the incessant worry of ‘will this be the time they find something’, or a prophylactic bilateral mastectomy.

I have been through mammograms and ultrasounds. I have even had a breast MRI (most recently in November 2019).  I have been on the other end of receiving unsettling news that they have found something in my mammography and ultrasound and a breast biopsy is needed. I’ve had a breast biopsy.  I have been sick to my stomach and shaking with fear and worry for days, to the point of nearly having a panic attack waiting for results. I’ve been terrified and nearly jumped out of my skin every time the phone rang waiting for results.  Irrational, yes. A terrible way to live.  Absolutely. And this was BEFORE I realized I had a genetic mutation.

As the doctor continued to speak with us, my gut was telling me although I had ‘options’, I really had no option at all.  My only real choice was mastectomy.  I blurted this out to the doctor, who told me to slow down, meet with the plastic surgeon and really think about it.  I told him I would, but my mind was already made up. No matter how upsetting it was.

My poor husband looked sheet white and I had that sickening feeling as we left the office. We got in the car and I cried the whole way home. I cried out of fear. I cried out of anger. I cried out of mourning. I just cried.

Fear, sadness, clarity

Although my gut was telling me that surgery was the way to go, I was still feeling fear and sadness. I decided to not make any decisions until after the holidays and really think about my options.  I met with a plastic surgeon and oncologist as well, just to make sure I had all the facts and understood the mutation and what having surgery meant.

My sadness ebbed and flowed over the next three months. I tried to compartmentalize this part of my life as much as I could over the holidays. Trying not to dwell on things. But there were moments that I would read something and begin to cry and feel terrified.  I cried while looking at pictures online of what a mastectomy looked like.  I cried when I read about reconstruction and what that entailed. I cried reading about not having any feeling in my chest once the surgery was over. I would cry speaking to friends and family about my fear of surgery and recovery. I cried when I got the garment I would need to wear following my surgery from the place I had been getting bras from since I first started wearing one.

But with all these tears came one thought.  I have been given a gift that most people are not given.  I have been given fair warning. I have been given a shot at lowering my risk. I have been given a blessing.

One more appointment

I made one more appointment with the breast surgeon, just to confirm my decision and be sure I wanted him removing something that has been a part of me for almost 50 years. Something I have always had a love/hate relationship with.

I am a 36DD, which to some may not seem big, but trust me, my breasts are ALWAYS IN THE WAY.  It’s funny when I think about it.  I can’t swing a golf club properly and doing a push up is a bit easier for me than most because I have less distance to go to the floor to touch my chest.

It’s almost laughable too, because being as full-breasted as I am, I have never once in my lifetime thought about stuffing my bra or needing implants. Nor have I ever dreamed of not having to wear a bra when stepping foot out of my home.  I can’t imagine walking out of the house braless, unless of course I want my tatas hanging to my tummy (I am nearly 50 and have nursed three children).  So, the thought of having them removed and replaced with something smaller is both scary and somewhat curious.

Using laughter to make it easier

There’s been a lot of joking along the way over the past several months along with the tears. Getting implants was one thing I never thought I would do, and here I am.  I also never thought I would get a tattoo, and I may be getting two since I am not a candidate for nipple sparing.  I also just saw an advertisement online from my beloved bra shop for tasseled pasties. Probably not something I will ever get, BUT something I could NEVER have worn before.  They would have pointed to the floor!  So with all of what seems daunting there are giggles in between. The possibilities are endless….LOL!

Balancing peace with fear

This may seem a bit strange, but I have felt at peace with my decision to have the procedure done, even before I walked into the surgeon’s office. Yes, I’ve cried. Yes, I have struggled. Yes, I’m scared, but I am at peace.  By making this choice I am giving myself a fighting chance.  One that I may not have had, if I did not have the genetic testing done. This I view as a blessing. So, on Wednesday, February 19th, I said ‘ta-ta to the tatas’ and am now waiting to say ‘hello to the hooters’.

*A special note. This blog was written before my surgery on February 19th and Covid-19 hit in full force in the United States. My story has taken some twists and turns since then. Please check  back soon if you would like to follow my journey.