I hate to refer to my family tree as dangerous, but it definitely didn’t do me any favors.
I have the curse of a flat backside from my mom but not the generous size of her full size-D breasts. Aesthetic wise, I didn’t seem to inherit a single characteristic from my dad. My every trait is in stark contrast to his. So it came as a surprise when I found out that I had received the BRCA1 mutation from him. Yet there I was earlier this year, standing on the streets of Bangkok, listening to a genetic counselor casually ruin my life over the phone.
My dad’s mother died of breast cancer in her 40s, and his sister had it multiple times. When it became clear that a BRCA mutation may be an indicator of cancer to ultimately come, he decided to get tested for the mutated gene. After his results came back positive last year, my sister and I got tested. There was a 50/50 chance either of us had the mutation.
Out of all the tests I’ve ever taken, this was one I had hoped to fail. To my dismay, I passed with flying colors. Thankfully, my sister did not.
I found out I had the mutated BCRA1 gene on Jan 15 – a strange way to kick off 2018. I’d manifested all of those hopes and dreams one normally does with the start of a new year. That all halted, as sudden as a bra unhooking when I received the diagnosis.
Out of all the tests I’ve ever taken, this was one I had hoped to fail. To my dismay, I passed with flying colors.
I desperately tried to get a grip on what my future might look like but could only see sad, sporadic pieces of what I assumed was to come. My imagination was clouded by the fact that my lifetime risk of getting breast cancer was up to 84 percent. I regarded each additional foreboding risk that comes along with having the mutation warily: a 63 percent lifetime risk of getting ovarian cancer, an increased risk of pancreatic cancer and melanoma and the 50/50 chance of passing the gene along to my future children.
I had no idea what lied ahead; all I knew was that a storm was brewing.
Thailand’s capital had been my home for about two years. I moved from Kansas to Southeast Asia after graduating university with the hopes of becoming a travel writer. I had done everything on my own thus far, though I had never felt so alone than I did when I received the untimely diagnosis.
I felt as though I couldn’t breathe; from Bangkok’s insufferable humidity or the sad phone call from the genetic counselor, I couldn’t tell you. The buses and motorbikes zooming by became alarmingly louder as I texted my family some thousands of miles away the dreary details of the diagnosis and how I was supposed to proceed because of it. I denied calls of condolences and tried to read loving text messages as they came flooding in from across the world. All I could do was stare at the phone as tears made my vision impossibly blurry.
I gave myself only that evening to feel sorry for myself before taking the first step after the diagnosis: getting a breast exam in Bangkok. I did that fairly quickly and (surprisingly) with ease but was disappointed when the specialist did indeed feel a small lump.
I then ventured to an international hospital in Bangkok to get an MRI. The results were tainted with light-colored masses, like white-hot lighting, that lit up the otherwise black screen. My heart dropped as the Thai doctor told me what this could mean. I felt invaded, and I knew this image would stay with me forever. At the time, it seemed as though it would’ve been completely natural for my breasts to have fallen off then and there, but there were biopsies to be done.
I had a total of three tumors, and the waiting game had officially begun. An ultrasound and an MRI breast biopsy were soon going to tell me if any of them were cancerous. I anxiously awaited my results in Phnom Penh, Cambodia. I had just moved there from Bangkok and was in a state of relentless anxiety, making it difficult to make friends to confide in.
These were some of the toughest days of my existence. My body seemed to slow down, as I felt heavy with the weight of my worries. I was either quiet in fearful contemplation or manic in denial. My nightly cries were thick and loud until thinning out with exhaustion. I would finally fall into an unsteady sleep, though regular nightmares jerked me awake. Then, I would go to work the next day and pretend everything was fine.
Luckily, all of the tumors were benign, but my decision was made: I was having a prophylactic mastectomy. I wanted to get the surgery prior to having any more tumors that were not cancer-free, and I had no desire to wait for this to happen and live overseas in fear all the while. Breast care and upkeep proved to be difficult abroad, and I was having to pay hefty hospital bills up front each time I visited. I was not financially or emotionally equipped to deal with either.
Many times after that initial call, I was beside myself; I was in denial. Surely, at the age of 25, I wasn’t going to have my breasts removed. I was too young to need a handful of surgeries to prevent ovarian cancer and a few other depressing diseases. I didn’t need to think about family planning in my twenties.
These were a few of the lies I never believed but hopelessly clung to anyway.
Surely, at the age of 25, I wasn’t going to have my breasts removed. I was too young to need a handful of surgeries to prevent ovarian cancer and a few other depressing diseases.
Reality sunk in quickly, however, as I made appointments in the United States with a plastic and general surgeon, a genetic counselor to discuss the dim future of my ovaries and a dermatologist. I was forced to come to terms with the fact that this was all very real and very scary.
Mostly, I staggered at the idea of not having breasts but knowing that I was taking the future of my health into my own hands far outweighed the alternative. The mastectomy would transform my lifetime risk of breast cancer of up to 84 percent to less than one. Those chances sounded pretty good to me.
I was sitting at the airport a few months after my biopsies holding back tears in the terminal. I’ve never cried as hard in public as I did that day. I was finally going home.
My seclusion in Southeast Asia was sacred to me. Because I was in a new city, I was able to shut out the outside world and allow each grievance to roll over me. The occasional phone call with loved ones back home made me feel like I was being melodramatic; only when I was alone was I really able to allow myself to fully grieve. Once I arrived in the U.S., however, I relished in the love and care my family and friends gave me, but that didn’t make me worry any less.
There were still so many questions that I didn’t have answers to: Was I getting expanders, implants or even keeping my nipples? All I knew for sure was that it was not a matter of if I got breast cancer, but when. I tried to remind myself of this each time I felt a pang of anxiety about the double mastectomy.
While I found myself in the wake of my surgery feeling either fearful or heartbroken, I also knew that there was still so much to be grateful for.
My cousin had a preventative mastectomy at 23. She had multiple infections and two emergency surgeries because of complications. My thoughtful, ass-kicking aunt has fought and beaten three separate diagnoses of breast cancer. Not even stage four breast cancer could kill her, and it’s a miracle she’s alive. My other aunt decided to get a preventative mastectomy when her doctors sat her down and advised her to do so to save her life. My dad had more pre-cancerous cells on his face than my mom does mood swings in a day.
They all tested positive for the BRCA1 mutation.
As an average, 25-year-old woman, I was dealt a bad hand. As an Iverson woman, I was not; if anything, I was lucky.
I never knew my grandmother who died of breast cancer, but I know she’d want me to follow in the brave footsteps of her children. My dad regrets passing along the gene, but he should know that there’s never been a moment that I blame him for this.
All I knew for sure was that it was not a matter of if I got breast cancer, but when. I tried to remind myself of this each time I felt a pang of anxiety about the double mastectomy.
A few months prior to my diagnosis, I spent my 25th birthday eating too many slices of vegan pizza followed by laser tag with friends in Bangkok. I was worried about mundane things like work deadlines and the fact that I was wearing grey and sweating profusely while running around and shooting my friends with neon beams of light.
I now realize how trivial most of my worries were prior to my diagnosis.
A few nights before my double mastectomy, I secretly mourned the inevitable loss of my breasts. Queasily, I mustered up joke after joke about my foreboding surgery, ready to use humor among family and friends to hide my fear, which was especially hard while feeling like your chest is a ticking time bomb. I waited for sleep that never came as jests about my breasts blew like a twister through my head in preparation for the surgery.
I woke up after my double mastectomy with a best-case scenario. My surgeon was able to scrape the inside of my breasts thoroughly enough so that my plastic surgeon could put an implant in straight away. I imagined my breast tissue being removed with a tool similar to a scooper slicing through chilled ice cream, and just like that, they were gone.
Of all the goodbyes I’ve ever had, this was the most painful one.
After the mastectomy, my breasts are rippled, flaked with dry and dead skin and sport gnarly scars on my underboobs that looks like a Cheshire cat grin. I still need another surgery or two to fix the ripples on my chest. The skin over the implant is too thin and will be fixed with an added layer of fat taken from my torso in late September.
Daily and depressing maternal thoughts torment me, as well. Being that I don’t want to pass the mutation to my children, I must now consider more expensive and alternative ways to have a family. Some days the idea of my future as a mother is so disheartening that I attempt to convince myself that kids are not in my foreseeable future, but I can’t seem to fool myself.
I anxiously await the day I can go back to Cambodia and get on with my old life with my new breasts. There are still more surgeries and diseases to consider because of the mutation, but for now, this is enough; it has to be. Until that day, I will learn to love my new breasts, embracing my newfound shelter and welcoming a second chance at a healthy, prosperous life while the storm subsides.
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