My Preventative Double Mastectomy

Trekking in Faith// Two Years Post-Preventative Mastectomy (2018)

Proverbs 31:25: She is clothed with dignity and strength, and she laughs without fear of the future.

I can hardly believe it has been two whole years since my preventative double mastectomy and three years since my sister was diagnosed with breast cancer.

Before Trekking Twice was born, I kept a small blog of some thoughts that were running through my head after my preventative mastectomy journey. And now looking back, I realize that my sister’s breast cancer diagnosis was one of the many factors in 2015/2016 that led me closer to my faith.

And so, I wanted to provide a recap of this influential trek of faith that I experienced back in 2016.

A Quick Recap

My grandmothers (maternal and paternal) had breast cancer before I was even born or as I was a newborn. My great aunt died from breast cancer when I was four. My great uncle died from male breast cancer (yes, it’s a thing!) when I was in college. My mother had a lumpectomy and radiation after being diagnosed with breast cancer when I entered the working world. Breast cancer was not a new term in my family.

My sister was diagnosed with breast cancer at the young age of forty-one and faced rounds of radiation and chemo as I was a stay-at-home mom to my two young boys (now aged four and one). And I was over here just trying to break the cycle…

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“I have a lump”, my sister said, but as the type of positive person that she is she brushed it off by saying, “I’m sure it’s nothing”. My mom was in town visiting in FL and we both were concerned right away. With our family history, how could it just be nothing?

After talking with her frequently through her mastectomy and treatments it became very apparent to me that 1 – I needed to do anything I could to avoid this for myself and 2 – I was probably next. My super supportive husband Logan agreed immediately so I set out on my journey to a prophylactic, bilateral mastectomy.

BRCA, BRCA, BRCA

And did you know that neither my sister nor I have the BRCA gene?

In my head, I can just hear Jan Brady from The Brady Bunch whining, “Marcia, Marcia, Marcia!” My sister’s breast cancer fight and my act of prevention feels a lot like Jan: we don’t have the “popular” gene in the breast health world.

Now, do not get me wrong, having the BRCA gene is serious and I know something that weighs heavily on your mind if you have it in your family. So my point is not to demean BRCA: it is to show that you don’t have to have the BRCA gene to WORRY about getting breast cancer.

When I began my preventative journey after my sister’s diagnosis, I found myself Googling really simple terms like breast cancer in family and how to know when to get a preventative mastectomy and my searches always seemed to come up short. There was not one answer to these questions – every case was individualized.

So I started at the first place I knew to go when thinking about a breast exam – my gynecologist. She sent me on a mammogram (which was totally normal – but then again, so was my sister’s!), and then I was left to decide my own next steps.

I went back to Google to find a general surgeon. Maybe, I thought, I can ask a surgeon what he/she would do if they were faced with this situation themselves. He looked at my record: good health, non-smoker, just a woman with lots of breast cancer in her family and he basically could do nothing for me. “See a geneticist,” he said. And I went back to my friend, Google.

And THAT was when the magic happened. I immediately made an appointment at the Breast Hill Center in Jacksonville and after reviewing my family history for hours over several meetings, the genetic counselor wanted to take on my case (for free!) to help me make the best decision. So many people think that this process is ridiculously expensive. It amazed me that I literally never paid one cent.

She conducted the 21 Breast/Ovarian Cancer Panel on me just by taking simple bloodwork. At first, it looked like I had no findings in the bloodwork which had actually made me feel confused. How could this not be genetic if so many family members have had it? After more review, including having my mom fly from NJ to test, my mom and I were declared variant for a gene called NBN.

The kicker for a woman like me who needs answers? There was no answer. NBN was a new, understudied gene and was not something to worry about, like BRCA for example. The genetic counselor’s exact words were: this should probably be fine but we don’t really know what NBN is yet.

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Well, great.

All of that research, time, excitement over limiting my chances of getting this horrible disease and we think it should be fine to do nothing.

I did not have the BRCA gene. My sister did not have the BRCA gene. My mom did not have the BRCA gene. And although they didn’t test, I’d have to bet that my grandmothers, great aunt and great uncle did not have the BRCA gene, either. But yet – they all still got breast cancer and I still felt the need to prevent it.

I chose to have a prophylatic, double mastectomy on September 19, 2016 based solely on my extensive family history. Nothing else. Twelve days later, I already feel more laid back about my future.

I urge everyone, female and male, to become familiar with your family histories of diseases like cancer. You may not have an obvious red flag on your health report card like the letters BRCA to tell you that you may have a future problem.

Getting Back to Working Out

One thing that people would be very surprised to hear about me is that I was dreading not being able to work out for six weeks post-mastectomy. Dreading.

Most friends from elementary school, or even college, likely wouldn’t believe that was true. My infamous tagline from 1999 – 2015 has been, “The last time that I worked out was 8th grade gym”.

Well, that changed when I was introduced to Trinity Fitness. Logan fell in love right away and actually became a trainer there within a month. He feels more physically fit but more importantly, more spiritually fit. My Facebook scrolling to find him a new gym led him to a relationship with Christ and I am ever so grateful for that.

Well, I drank the Trinity water, too, and became obsessed. I began working out three days/week, eating clean and seeing the results. I felt strongly and my own relationship with Christ grew stronger, too. Our marriage, our parenting – everything is stronger because of Trinity Fitness.

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Well, my surgery caused a holding pattern in my fitness routine. I knew how important this surgery was but I didn’t realize how hard it would be to not feel as physically fit.

After six weeks and one day, I headed back to my three day/week workouts and it felt amazing! Frustrating, but amazing. It is hard to go slower, lift lighter, be patient. But it feels good to be back and I don’t plan stopping anytime soon!

In the Media

When my sister was diagnosed at age 41, it all became real – one of us fighting cancer at a young age and the other feeling pretty confident that she would be next.

My sister could have kept her journey private, but instead she decided that we wanted to help others along the way. She created an amazingly effective blog, so much so that it scored her tons of media attention to help spread awareness.

She did several news interviews and appeared in local newspapers, all in an effort to spread awareness. She even appeared in a Penn Medicine commericial that we seen all over the tri-state area!

I also had an amazing experience my story of prevention with local news anchor Letisha Bereola and met her in a way that could only point back to God.

My Faith

Around the time of my preventative mastectomy and well into my sister’s battle with cancer, both my husband and I had begun seeking a more intimate relationship with God. We were literally surrounded by Trinity Fitness family, having them pray outside of my home the night beore my surgery.

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It became evident to me that these Christian friends were more than just friends; they guided me and lifted me up daily. And so, looking back I realize that I needed to endure something big like this surgery and my sister’s battle to learn who I can rely on most – family and these dear Christian friends.

My preventative mastectomy has helped me have an avenue to share about my faith and what Jesus has done in mine and my sister’s lives. It was so easy to be fearful of the future (and in many ways, still is) but I know that when clothed in strength with the armor of God, my family and I can handle any earthly battle thrown our way.

Think Pink! Meg

 

 

 

One comment

  1. Jane Siegle says:

    Meg,

    Really good!

    Mom

    > WordPress.com

    Like

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