Did I eat too much sugar? Was I exposed to too much plastic? People are quick to tell me their own theories, like being on birth control or storing my phone in my bra. Everyone around me is trying to understand how this could happen to someone my age. Because if it can happen to me, it can happen to them, too.
When my family and I asked the doctor, she said it was simply bad luck. Life is random. It’s possible there’s nothing I did or could have done. But that doesn’t make it any less unsettling to me or the other young adults who increasingly find themselves in this situation.
In 2022, only 4 percent of invasive breast cancer diagnoses were among U.S. women under the age of 40. But recent studies show more young people are getting cancer, including breast cancer.
For young patients like me, it’s hard to wrap our minds around the randomness of it all.
Finding a lump, then a diagnosis
It was June of 2023 when I first noticed a large lump in my breast while I showered. I dismissed it at first, but when it didn’t go away, I told my primary care doctor I was worried. She wrote me a prescription for an ultrasound, but I had to wait three months to get an appointment in D.C.
I had heard benign cysts were common in young women, but immediately after the ultrasound, I was scheduled for a biopsy. The imaging had shown an abnormal mass that needed further testing. Worried, I asked my mom to fly out from Phoenix to be with me.
When I walked into the exam room on a Tuesday, I caught a glimpse of my paperwork. “Pre-diagnosis: cancer,” it said.
A few days later, my doctor called with the initial diagnosis: high-grade invasive ductal carcinoma, a fast-growing cancer that is more likely to spread. The mass was about five centimeters. It was Stage 2.
The long delay from finding a mass to getting the ultrasound and a diagnosis is just one way young cancer patients often aren’t taken seriously. I’ve heard of women whose doctors wouldn’t order a mammogram because they were considered too young. Colon cancer patients are sometimes diagnosed with hemorrhoids rather than cancer.
Making decisions about fertility
I decided to move to Arizona to be with my family for treatment. At my new hospital, I found out more about my diagnosis, like that I had triple-positive breast cancer, which responds well to chemotherapy and targeted treatments. I also learned that I would be able to use a technology called cold-capping to potentially save my hair.
I’ve felt the most pressure on my decision not to retrieve my eggs, since my treatment impacts my fertility. I immediately knew it wasn’t what I wanted. I didn’t want to subject myself to more intrusive medical procedures, and having biological children has never been important to me. My doctors and my family wanted me to fully understand the weight of my decision, giving me multiple chances to change my mind, but I didn’t.
I also decided to try to save my hair. The treatment requires a special frozen cap worn tightly on the head — like a swim cap — before, during and after a chemotherapy session. A lot of people warned me that the cold cap would be painful, but once I got past the first 10 minutes, I didn’t find it that bad. It was like going without a beanie in the snow. It was inconvenient during chemotherapy sessions, but worth it to keep some sense of normalcy. I lost the most hair after my last treatment, but my doctors still compliment me on how much I managed to keep.
Finding comfort in the ‘still alive’ club
I’m grateful to attend a hospital that has a young adult program for patients like me. When I had a procedure to implant a port into my chest to make chemotherapy infusions easier, a specialized nurse for young adults saw that I was upset. She guided me through the empty chemo ward so I would know what to expect before my first treatment.
After I received my full treatment plan, she also introduced me to a support group. We meet once a month to catch up. Some people are recently diagnosed, like me, or re-diagnosed, and others have met their five-year remission milestone. When I joined, the group made me feel less alone. I knew they had all been where I was.
At the group meetings, we share frustrating stories — like collapsing veins and central line placements — or encouraging ones of nice doctors and early hospital releases. We talk about playing Pokémon and the Sims to distract ourselves. We follow each other on Instagram.
We try to keep it lighthearted, laughing as we color Thanksgiving turkeys on the table, decorate gingerbread houses or make vision boards. Group members joke about being part of the “still alive” club and how it’s never “cancer-free,” but “cancer-quiet” — a way of saying our lives will never be totally free of cancer, as we deal with continued checkups and lingering symptoms. But we can live our lives relatively quiet from cancer.
We’re all going through unique battles, which reminds us of how unfair our situations are. We were the “unlucky” ones. But instead of asking “Why me?” we commiserate that it is us. There’s a shared understanding that none of us wants to be there, or should be there, but there we are.
My journey isn’t over, even though I’ve completed six rounds of chemotherapy and undergone surgery. I worry about a recurrence. I wonder where I’ll end up at the end of all this, on leave from my job and pulled from my life in D.C. I worry about my friends with cancer as they fight their own battles, and the other young people trying to understand why this happened to them.
I remember when I went in for my first MRI. The test would determine whether the cancer had spread elsewhere. The woman at the front desk asked me for my birth date to print out my wristband.
“We have the same birthday,” she said. Month, date, year, everything.
I laughed it off at first, but the moment stuck with me. We were on opposite sides of the counter.
