“I’m sorry to inform you that your test result for the BRCA1 gene mutation is positive.”
I had been expecting this phone call. I knew my chances were 50/50. I wasn’t shocked. More annoyed, really. I was newly married and had just discovered I was pregnant with our first baby. I didn’t have the desire to think about it too much for the fear of it overwhelming me.
Until about six years later, on May 20th 2016. The day my mom lost her seven-year battle to ovarian cancer. The day everything changed.
She was as strong and resilient as they come. And she was just gone. The two weeks leading up to her death, I watched her fade away. It was painful beyond measure. During those two weeks, I saw how cancer kills. The process is ugly and brutal. I’m angry my mom had to go through it.
I don’t want to go through it.
With my mom gone, I know that now is the time for me to think about it.
Because I have the daughter of my dreams and she calls me her best friend. And I have three impossibly sweet boys who hold my heart. And my husband and I talk about the adventures we will go on when we’re older.
I don’t want to die and leave my family.
The reality is that I’m at a very high risk for getting breast and ovarian cancer.
Thankfully, my mom left me the most important gift. The gift of knowledge. Knowledge that I carry the same genetic mutation that prevented her from living a longer, fuller life. The life she deserved and would have appreciated more than most. The same life her own mother had cut short due to this ugly disease that our broken gene cannot fight.
Aside from the high risk of getting cancer, the BRCA1 and BRCA2 genes are meant to be tumor suppressors. With a mutation on these genes, the growth and spread of cancer can’t be controlled. The odds for survival are daunting.
My mom and grandmother didn’t know they had a significant risk of getting cancer.
But I know.
So where do I go from here? I can wait and possibly get the cancer I’m at such a high risk for. Or I can opt for a preventative double mastectomy (removal of both breasts) and an oophorectomy (removal of ovaries and fallopian tubes).
When I met with my breast surgeon to discuss the double mastectomy, he explained how all of the tissue is scraped from the chest. He referred to what is left as “the flaps of skin remaining.”
The good news is that my nipples should be spared. That sounds gruesome, I know. Sorry. But that’s not always the case with this surgery. So I’m focusing on what I hope to be my small victory. I might not feel them, but they will be there.
And if I use my own tissue for the reconstructive surgery, the results should look and feel normal (well, relatively speaking).
But how about throwing my body into early menopause by removing my ovaries? Doesn’t that sound interesting? As if the thought of menopause at the natural age of occurrence isn’t appealing enough.
There’s also a sadness in letting go of my ability to have more children. I know I shouldn’t complain. I have four sweet kids who I love more than anything. But part of me wonders if there may have been one or two more down the road. The option being off the table just feels harsh.
But everything sounds minimal compared to death by cancer.
Letting go of tangible pieces of myself feels hard. But it will be worth it. My breasts fed my babies so as far as I’m concerned they’ve already done their job. Will I miss them? Yes. Will my husband miss them? Probably. But that’s all secondary.
And the silver lining in all of this is that I’ll no longer need to have annual mammograms, MRIs, and CA-125 checks (blood work).
I mean, breast MRIs and mammograms are just…awkward.
And once I’ve recovered from my mastectomy and decide to say “farewell” to my ovaries, I will no longer need pelvic ultrasounds (also awkward).
But most of all, I will have peace of mind.
My most recent breast MRI showed an “area of concern.” This resulted in a follow up ultrasound and ultimately a biopsy.
I felt as though I had been diagnosed with cancer and my husband and I panicked. My worst nightmare was coming true.
Until I received word that my biopsy results were negative. My preventative surgeries will hopefully eliminate that dreaded fear of a positive test result from ever returning.
So stay tuned. I don’t want people to wonder why I look or seem different. Or pretend that I’m fine when I may not be.
Social media doesn’t often portray the real side of our lives. I have been blessed in so many ways and openly share about our great times.
But this is my ongoing trial. A small one compared to so many others. But it’s mine. And I’m thankful that I don’t have to face it alone. I have amazing family and friends to lean on.
And my mom will be with me. I will make sure her death counts for something huge…her daughter’s life.