My name is Heather, and I am a BRCA 1 gene mutation carrier.
Being a BRCA carrier means one has a much higher risk of being diagnosed with breast or ovarian cancer than the general population. Let me tell you how I came to learn of my genetic status and what I’m doing about it.
Cancer runs in my dad’s side of the family. I grew up only hearing stories of my father’s mother because I never met her. She had three children and passed away from ovarian cancer while they were young. When I was a child, my aunt got breast cancer at the age of 35, ovarian cancer in her 40s, and finally, breast cancer again in her 50s, from which she passed away.
For as long as I can remember, I’ve worried about getting cancer. I’ve been “on the lookout” for the better part of my life, WebMD-ing myself a cancer diagnosis on the weekly. When my aunt Marj was battling cancer, she told me about the possibility that a gene mutation could be responsible for the presence of cancer in our family. This was the first time I heard about BRCA, and I decidedly tucked it away into a back corner of my mind for another time. I was in my early twenties and feeling pretty invincible. Underneath the feelings of invincibility, however, was a sense of fear and doom which I wasn’t ready to face. Marj was never tested for the BRCA mutation fearing insurance companies could exclude her on the basis of a pre-existing condition—and as a cancer survivor she needed insurance. Since we had no confirmed presence of a mutation in our bloodline, it was pretty easy to just “forget” about it. I’m fairly good at stuffing my emotions—er…I mean, compartmentalizing.
It wasn’t until I was in my 30s that I started looking into genetic testing. I felt much less invincible as I approached the age Marj was when she was first diagnosed. I was scared to know the truth but even more scared to miss an opportunity for prevention. I had no idea where to start, so I did what every good millennial would do: I Googled it. I found a clinic, a genetic counselor, and consulted my insurance. As far as insurance was concerned, I learned that because of my family history, I qualified (many times over) for genetic testing. This news was both good as well as a bit unnerving. Whenever insurance companies are super eager to pay for something out of the ordinary, that’s a sign that it’s important (read: you’re probably screwed).
The test is a simple blood draw and a few weeks’ wait. After a long few weeks of waiting, I got my results. There is nothing quite like being told you have an 85% chance of getting breast cancer and a 40% chance of getting ovarian cancer. I felt betrayed by my body. I felt a lack of confidence in my body’s ability to stay healthy and keep me alive. My feelings were complex and profound. To emotionally complicate things further, I was 8 months pregnant with my second child when I received the news.
Dealing with difficult news while pregnant is particularly poignant given the added hormonal surges, but it was also beneficial to me in some real ways. First, being pregnant forced me to take a step back to process and to think. I certainly couldn’t forge ahead with any surgical intervention for quite some time. In fact, I couldn’t even begin regular MRIs and mammograms because this is not possible if you are planning to breastfeed. I was forced to do nothing, to take Sabbath. During this time I was able to regain some trust in the body that betrayed me. Just because I had recently discovered my gene mutation didn’t mean it had recently developed. It had been written in my genetic code since birth and we’d been fine together so far. Secondly, being pregnant caused me to focus on my priorities. I honed into what’s truly important: my family. I’m already fiercely protective of them, but my pregnancy only intensified this notion. This purpose helped me formulate my plan of action.
People with the BRCA gene are given options. There is no reliable screening for ovarian cancer, which means it is usually caught in a late stage with a bleak prognosis. Therefore, the recommendation for prevention is to have your ovaries removed when you’ve completed your family (this surgery is in my not-too-distant future). Concerning breast cancer, since it is detectable at an early stage, a patient can choose a few routes. First, she can undergo regular MRI’s, mammograms, and clinical exams in hopes to catch cancer at its earliest stages. Second, she can take risk-reducing medication such as low-dose and long-term chemotherapy. Finally, she can opt for a preventative mastectomy. I knew right away that my endgame would be mastectomy. As severe and barbaric as removing my breasts would be, it was important to me that I do everything I could to preserve my health. (Surprise, surprise, not actually having boobs greatly reduces your risk of getting breast cancer.)
Deciding to have a preventative mastectomy and actually following through with it are two completely different things. When I started consulting with surgeons and scheduling surgery, shit got real. Could I do this? What would this surgery mean for me?
My 5-year-old son’s love language is physical touch. He prefers to give and receive love through human contact. Holding hands, high-fiving, hugging, wrestling… physical connection is his jam. Hugs energize him, they calm him, and it’s how he resets after a difficult day. His constant physical presence can be off-putting to someone whose love language doesn’t match his own, but not me—I welcome it. Together we’ve created the best hug there is: The Koala Hug. A Koala Hug happens when I sit on the floor cross-legged and he sits on my lap and wraps all his limbs around my tree-trunk torso. It’s close, it’s calming, it’s a hug just for us. Every moment in this embrace is etched into my heart. As I read about what I could expect post-mastectomy, I learned I would very likely lose all sensation in my chest. Could I bear never fully feeling my child’s hug again?
With this mental war there was grief, there was sadness, there was uncertainty, there was fear, there was anger, but, believe it or not, there was also gratitude. I was grateful to have the knowledge and opportunity to fight for my health proactively. I had an opportunity that my aunt, my grandmother, and other family members did not. It was difficult to wrap my head around the entire situation. To say the least, it rocked my world.
I’m not sure how I went through it all (read: through lots of prayer and grace from God), but I found the best plastic surgeon this side of Edina, set a date, and took it day by day. One of the things I was most worried about was that after I woke from surgery I would regret my decision and it would be too late. Could I ever be 100% certain of a decision like this? Well, surgery came and went, recovery was hard but narcotics were good, and I never looked back. From the moment I woke, I never regretted or questioned my decision. It was indeed the right choice for me and for my family.
In my life, I like things to go the way I plan them to go (just ask my husband), and they usually do go as planned because I’ve taken great care and effort to prepare for every outcome. Some call it controlling, some call it committed foresight…tomayto, tomahto. Either way, I quickly realized that, along with many other things, I can’t control my genetic code. Being seriously predisposed to cancer was not part of the plan I had for myself. It is out of my control.
However, I can control what I make of it. I can control my response, and it’s freeing to know I’ve done my best.