The following is the personal story of Kaylee Denmead, as told to Abby Haglage. Denmead will be getting a preventive double mastectomy in November because she has tested positive for a gene mutation called BRCA1, which greatly raises her chances of developing some form of breast cancer in her lifetime.
Last month, my friends and I rented a studio, hired a photographer, and took photos shirtless — a “boob photo shoot,” we called it, playfully. In one sense, it was just a fun chance to embrace our bodies, but in another sense, it was something bigger — a way to preserve the past.
That’s because this November, I’m getting a preventive double mastectomy. I’m only 24.
I’m not ever going to pretend that I’m not scared — I am scared. But I have no doubt this decision is the right one. In many ways, I’ve been preparing for it since I was 18. That’s when doctors told me I had something called a BRCA1 mutation, an altered gene that means there is a 72 percent chance that I’ll get breast cancerby the time I turn 80 (for the average woman, it’s 12 percent).
Some people decide to live with that risk. I’m not one of them. To me, enduring breast cancer isn’t some distant nightmare — it’s a reality I’ve seen up close. My mom found her first lump when I was in fourth grade. She was just 40 at the time — the PTA president, my biggest supporter, and the kind of mom every kid wants. She was the one who always brought extra snacks, the mom who would drive a stranded classmate home, even if it was in the opposite direction.
Her diagnosis happened well over a decade ago, long before BRCA mutations were well known. So despite a family history of breast cancer, and a father who endured colon cancer, doctors treated hers like a normal case. She was prescribed chemotherapy and radiation, which she endured with a quiet strength. She and my dad were determined that my brother and I live a normal life, so we never knew the gritty details.
After nearly two years of treatment, she went into remission. But my mom — my amazing mom — was not one to simply wait around. She had a feeling the cancer was more than bad luck and asked the doctor to test her for a genetic component to the disease. Insurance carriers didn’t cover the BRCA test then, so she and my dad had to pay out of pocket. It came back positive for BRCA1.
Kaylee, left, and her mom. (Photo: Courtesy of Kaylee Denmead)
Following that test, the doctor told her then that if she spent two years in remission it would be good, and five years it would be great. She immediately got a double mastectomy and reconstruction, hoping to reduce her risks. But just under two years later, she was diagnosed with breast cancer again, in five parts of her body. Looking back, I’m not sure how she kept going. She knew her second diagnosis was the beginning of the end. But somehow she did. She was what I’d call a functioning sick person — still going to events, still volunteering at my school, still keeping up with our lives.
Her treatments started slow at first, with IV sessions every other week, increasing in frequency until she was going more and more often, for multiple hours. Eventually she began getting chemo delivered directly into ports in her chest and head, because the cancer had spread to her spine.
The end came slowly and then all at once. In early October 2009, two years after her diagnosis, the doctors told her there was nothing else they could do. She passed away less than a month later, on Oct. 24. She had just turned 47; I was 15. No matter how much we knew it was coming, we were not prepared. You’re never prepared.
My mom’s battle with breast cancer shaped my whole life — she was sick for a third of my childhood. After her second diagnosis, there was never an inkling that she would get better, and she knew she would be sick until she passed away. So in the months before her death, she began putting together a journal for my brother and me. Afterward, my aunt printed out copies and gave each of us a bound one to keep. It’s 65 pages long. Some entries contain affirmations; some simply explain how she felt. Others provide details on the BRCA mutation and information we need to know.
I had her memory and that journal swirling in my head the day I read a piece that finally kicked everything into gear. It was published by the New York Times in 2013, titled “My Medical Choice,” written by Angelina Jolie. In it, she described her decision to have a double mastectomy, inspired both by the death of her mom from breast cancer at age 56 and the knowledge that she herself had the BRCA1 mutation.
I remember I was interning in New York at the time and people were talking about it in the office. I thought it was a beautiful piece, but it pushed everything front of mind for me, and I had to leave early. I was 18 at the time and knew then that I needed to know. So soon after I sat down with my dad and told him my plans, and then the rest of my family too. I asked my grandpa, my mom’s dad, if he would come too. Since he had colon cancer, we thought the gene likely started with him, and I wanted to find out for sure.
Photo: Courtesy of Kaylee Denmead
That fall, my grandpa and I went together to get tested. It was an emotional day. We went to my mom’s doctor and — for the first time since she passed — saw her and all the nurses who had been treating her for seven years. They knew my mom in a way few people did. Since I look a lot like her, they could see her face in mine. It was surreal, to say the least.
It took a few weeks to get the results, but when the genetic counselor asked me to come in for the results, I knew. I was admitted to the high-risk program at Memorial Sloan Kettering Cancer Center in New York City, where doctors told me I would need to do surveillance checks every few months. After six years, I started to feel like I was simply waiting around to get sick. So I talked to the surgeons about my options and shared with them my reasons for wanting the surgery.
We agreed that it was the best option for me. I still feel certain that it is, and I’m looking forward to the waiting period being over. I decided to do it in November, during fall, my favorite season. That way I have the holidays right around the corner to cheer me up. I’ve been training to run a Tough Mudder in the weeks before — something to remind myself of how strong I can be.
In a unexpected way, the part I’m most nervous for isn’t the actual surgery but the aftermath. I’m getting reconstruction, which I always planned on, but the fact that I won’t have any feeling has totally thrown me for a loop. I think most women work really hard to get to a place where they like their body. It’s something I’ve worked really hard for and that I struggled with a lot. I’m nervous after all this is said and done about what I’ll think of my body. Will I look in the mirror and be happy with what I see? Or will it never be good enough again?
My family and friends are hugely supportive, and I’ve found a group called the Breasties that I love. But moments like this, I miss my mom the most. I wish she was here to talk me through this, to tell me everything is going to be OK. It’s really hard that she didn’t get to see the adult that I was going to become. Knowing that this is something that connects us — even if it’s a negative thing — does empower me. She passed away before she could see this. But I like to think that maybe she’s watching, and resting easier knowing I got out on the other side.