BRCA Gene: My Mastectomy Story
“Can you feel this?” My aunt asked, pushing my fingers into the side of her breast. I lurched back, ripping my hand away, alarmed at the large lump I’d just felt. Allie was biologically my aunt (my mom’s half-sister), but considering we were both 28 years old and just ten months apart, she felt more like my sister, and most definitely my best friend. “I have an appointment coming up. I think it’s probably a cyst,” she told me, although her eyes said she wasn’t sure.
Being so close in age, the bond we shared as children was impenetrable. Of course our moms took us everywhere together growing up…parks, field trips, and playdates with cousins. Every memory of my youth has her in it. As we got older, through our middle school and high school years, the time you start to become your own person and choose your own people, we still chose each other.
We had sleepovers every weekend, we shared groups of friends, and crushes, and clothes, and laughs…lots and lots of laughs. We made promises. Promises and plans to stay close forever. We planned on living next door to each other, having families together, Sunday barbecues after church with our kids running around barefoot in the backyard. But God had different plans.
The next few years were excruciating to watch. Allie’s lump wasn’t a cyst. She had stage 3 breast cancer, and she underwent a bilateral mastectomy, ovary removal, chemotherapy and radiation. She lost her hair, among so many other things, but she never lost hope. She battled, she survived, and she conquered the shit out of cancer those next few years as we opened the door into our early thirties.
Over 260,000 new breast cancer diagnoses are confirmed each year, and up to 10% of those are linked to the gene mutation BRCA1 and BRCA2. While most women have heard the term BRCA, it’s not commonly talked about at checkups unless you have had some sort of family history of breast or ovarian cancer.
These genes are cancer blockers, which means their number one job in our bodies is to produce proteins to help repair damaged DNA. When there is a mutation in the gene, proteins cannot be formed and cancer has a gateway to grow. Up to 72% of women with BRCA1 will develop breast cancer at some point in their life, and up to 69% with BRCA2.
Not only does the BRCA gene heighten the risk of breast cancer in both men and women, but it also increases the risk of pancreatic cancer, skin cancer, ovarian cancer in women, and prostate cancer in men. It’s the jackpot gene that comes at you from all angles.
When Allie called to tell me she was positive for the gene mutation, BRCA2, we were all in shock. To be honest, this was the first I’d heard of the mutation. But after researching it, the severity of it began to sink in across the family. No one had breast cancer in our families, at least not that we’d ever known.
The mutation has a 50% chance of being passed from parent to child, so finding out which parent carried the gene was the most crucial next step. Testing for BRCA mutations is done by a genetic counselor and usually not covered by insurance, costing up to a few hundred dollars just for one genetic test.
DNA testing companies like 23 and Me advertise that they test for BRCA, but they only check for three strands out of the many different variants that exist. So up to 90% of people with the BRCA gene mutation go undiagnosed with test kits like this. A study revealed that 100,000 people tested negative in the kit but tested positive when getting diagnosed by a genetic counselor, a scary thing to think about.
My grandpa tested positive for the gene which meant that not only did he pass it to Allie, he could have passed it to his two other children as well. It’s a game of roulette. A 50/50 chance. My uncle tested negative which was great news, and also meant that his kids and grandkids didn’t have to worry either. Then it was my mom’s turn to test. She called me in tears with her results. She wasn’t crying because she was positive and scared, she was crying because she was positive and there was a chance that my brother and I could have it. 50/50. I reassured her. I told her to stop apologizing. I told her it wasn’t a big deal and I wasn’t scared about it at all. At that time, I really wasn’t.
My brother called to tell me he was negative. Thank God. Normally, you have to get the results in person from your genetic counselor, but I assured her it was no big deal and that a phone call with the results was fine. I remember, I was sitting in my bed, working on my computer when the phone rang and I saw the name of the clinic pop up on the screen. “Hey Ashley, I have your results here.” The clinician’s voice was easy and upbeat. “I wanted to give you a call before the weekend so you wouldn’t have to wait any longer.” Sounded promising. “Your test came back positive for BRCA2.” Oh…
That wasn’t what I’d been prepared to hear, but I replied back replicating the cheerful energy in her voice. “Okay, thanks so much for calling. Have a great day.” Click. I assessed myself for a moment. I was fine, everything was fine. The best part was knowing because knowing meant power…right? In the following weeks, I met with a genetic counselor who assessed my risk, told me my options, and wrote out a medical plan for the upcoming years.
My risk due to the BRCA2 gene and the early family history of Allie being diagnosed at 28, accumulated to a whopping 82% chance of breast cancer in my lifetime. Thanks Katniss Everdeen, but the odds are definitely not in my favor on this one. The plan was to switch between a breast MRI and mammogram every six months for early detection. The sooner breast cancer is caught, the higher the survival rate. For women that catch it at stage 1, the five-year survival rate is up to 99%.
The other fallback with the BRCA gene mutations is all the other cancer risks, including ovarian cancer, which increases up to 17% by the age of 70. So, along with the breast exams, a six-month pelvic ultrasound was also scheduled, and a yearly full body skin check to top it off. Then there was the option of surgery, but I wasn’t ready to talk about it or even entertain the idea. It almost felt wrong. Like I was taking my life and future into my own hands when I wholeheartedly knew even if I lived by my own plan, God had a plan of his own.
After four years of testing, the white walls of the hospital, the cold slick feeling of gel on my stomach, and the loud buzzing of the MRI machine in my ears, all became so routine for me. The MRI was always the worst, I held the bulb in my hand knowing if I squeezed it, the machine would stop and I would have to reschedule and do this all over again. So I kept my eyes closed, worked on controlling my breathing, hoping that the rise and fall of anxiety in my chest wouldn’t mess up the results.
Life was good. Allie had been cancer free for years, I was testing negative on all my checkups, my two sons were growing up so fast, and in 2017 Allie and I married our husbands just two months apart from each other. Our plans were falling back into place again. Sunday barbecues, here we come! But God showed us one more time that our plan wasn’t his.
Allie’s yearlong back pain, which was pushed off by doctors as nothing of significance, was confirmed to be a growing, spreading tumor. The cancer had come back, but this time with a vengeance. It metastasized into her pelvis and spine and at stage 4 the traditional chemo and radiation wasn’t an option again.
We sat together often, mostly pretending everything was ok, but sometimes talking about the future and how scared she was, how scared I was, how scared I would be without her. Up to this point, surgery wasn’t really an option for me. I had put it off for so many years but as I began to get older, and my kids became more independent at home and school, the thought crossed my mind more and more often. It wasn’t until Allie told me that all she wanted was for me to live a full life, that I knew what I had to do. Knowing about the BRCA gene was a blessing, a chance at life, and a doorway to opportunity that God was putting right in front of me.
On September 1st, 2021, when I was 34 years old, I woke up in a hospital bed after a six hour bilateral mastectomy and reconstruction surgery. The first surgeon removed all my breast tissue, carving me out like a jack-o-lantern on Halloween. Then the plastic surgeon took over and placed in breast expanders to hold the pocket of skin like a balloon that is filled over time to prepare space for the final implant.
The surgery went well, the pain in my breasts was minimal, and I was so packed in with gauze I had no clue what was going on under the light pink Velcro sports bra. A group of doctors came on day two and opened up the bra, exposing the Frankenstein art that had been performed on me. Yellow bruising rounded my breasts, but they were full and symmetrical and actually really beautiful. When I had checked into the hospital, my lifetime risk of breast cancer was 82% and now here I was, being rolled out to the car in a wheelchair with just a 6% chance and some scars.
The weeks that followed were strenuous. I couldn’t get up much. Allie let me have her recliner that she used during her surgery, chemo and radiation because the drains that came out of the sides of my body didn’t allow me to lay any other way than on my back. I looked like one of those stuffed animal chew toys for dogs. Gauze pushed out of every area of the Velcro bra and rings hung from the side that helped my incisions drain.
My husband was incredibly patient and attentive. He helped me change my gauze, checked the black stitching of the incisions for any sign of infection, and emptied and cleaned the cups I used to drain and measure the fluid every four hours. My kids were patient. For the first time in my youngest son’s life, I couldn’t lay with him as he fell asleep at night. I couldn’t cuddle him tightly and watch him fall asleep, as I’d done every night since he was born. But I knew that my surgery was bigger than this, and ultimately it would allow me to be around to help tuck in his grandchildren one day.
Luckily, the pain itself was very minimal. Since I couldn’t walk or drive, friends helped my kids with school drop-off and pick-up, they brought me meals and even came over to help me wash, detangle, and braid my hair. It was the first time that I felt out of control over everything. I was never good at asking for help, but luckily I didn’t even need to. The love, support and help came without a single question from my lips.
To be honest there were moments of grief in those weeks post-surgery. I spent some time adapting to my new body, worrying if I made the right decision, and praying for healing. Before the operation, I did a ton of research. I joined BRCA support groups on Facebook and saw posts from women with difficult stories where the surgeries didn’t take well, or the implants made them sick, or they lost their nipples in the process. It was gut wrenching to absorb their stories. Yet, I still felt I was making the right decision for myself. And that’s just it. It’s a decision each person has to make. It may not be the same decision for everyone, and that’s okay. I saw the possible consequences. I knew the risk, but I also felt I couldn’t afford the risk of not doing it. Not after seeing Allie go through this again, not after loving her and knowing I could lose her.
After months of appointments with the plastic surgeon filling the expanders, I was finally ready for surgery number two. In January 2022, the expanders were removed and 415cc of saline implants were swapped out, completing the full reconstruction. The stitches came out, the pink scars turned white, and now there is just a faint remnant that underlines my breasts, plus a few other incisions along my sides and stomach that remind me of the journey and the part of me I needed to leave behind.
My journey is still not over. While my breast cancer risk is down and my surgeon says I’ll never need another mammogram again, ovarian cancer, aka the silent killer, still lurks in the shadows of my mind. In a few years, I’ll undergo a total hysterectomy with a bilateral salpingo-oophorectomy. That’s a fancy way of saying they will be removing all of my reproductive parts: uterus, ovaries, fallopian tubes, and I’ll continue to have my yearly skin checks, of course.
Now this isn’t to say I will never get cancer. That’s not something anyone can ever say. My grandfather with BRCA passed away from lung cancer, and my uncle, who did not have the BRCA mutation, developed breast cancer among many other cancers throughout his life before he passed. The point is, we can’t hide from cancer, but we can absolutely choose to do something about it.
Early detection procedures, preventative surgeries, and cancer reducing medications are available today, and genetic testing is the first place to start. Talk to your doctor about your health concerns and family history. Talk to your parents, grandparents, aunts and uncles, to find out more about your ancestral history with cancer and discuss your findings with your doctor.
I’ve talked to my kids about testing for BRCA when they are 18. My oldest questions why he can’t get tested now, but there’s no point in worrying this early. I don’t want them to feel the burden and the looming shadow hovering over their adolescent years. While knowledge is power, knowledge is also a weight that you carry. But we will cross that bridge when the time comes. In the meantime, I choose to share my story in hopes that it will inspire people to be proactive with their heath.
Last year, I worked with a local restaurant, Tequilas Burbank, to host a fundraiser event, collecting donations for people who can’t afford genetic testing. The restaurant owner, Patricia Rivera, shared her own story of losing her sisters to ovarian cancer. I shared my journey with Allie, who was right there with me, allowing me to be our voice and hopefully inspire one person to make that appointment, get that checkup, and just listen to their bodies and hearts.
Allie continues to live a beautiful life, taking regular chemo pills, undergoing routine scans to monitor any growth, and sharing pictures of her recent trip to Thailand with her husband where she fed elephants at a sanctuary, swam in waterfalls and visited local temples. While she never had kids, she loves mine like her own, and even though we don’t live next door, our husbands have grown to be great friends. It’s not the picture we had envisioned in our mind, but God did not disappoint.
For more information about the BRCA gene, visit The National Cancer Institute's website and talk with your healthcare provider.
Ashley Erikson is a feature writer and editor for myBurbank News and owns her own digital marketing business where her writing skills, creativity, and eye for design allows her to work with non-profits, small businesses, and production companies. She graduated from Cal State Northridge with a B.A. in English, Creative Writing and has a passion for sharing positive and uplifting stories, including her own. Ashley lives in Burbank with her husband and two boys where she is an active board member in the PTA at both schools, manages mom support groups on Facebook, plans community events and fundraisers, and leads the “Women of Burbank” podcast where she interviews women business owners and the topics that are important to them.