It All Started With a Migraine

It all started with a migraine.

I was sitting at my desk, trying to focus on my dual monitors, but my head was pounding. I’d had a migraine for three days straight. My vision started to get blurry, and I realized I couldn’t work this way. I spoke to my supervisor and asked her if I could go home early. I drove home, telling myself, “It must be the heat.” It was the middle of July. I called my primary doctor and scheduled an appointment to see him and talk about how to take care of these migraines. I had just seen him a couple of months ago for a physical, which he said I needed “because you’re 35 now.” Everything looked normal, so I had no reason to see him again so soon. But I scheduled the appointment, went home, and rested.

The morning before my appointment, I woke up for work and felt a sharp pain in my left breast. It made me catch my breath. I touched the area gingerly with my finger tips and felt a lump. When did that get there? It was tender, but I reminded myself that I’d stopped breastfeeding my son a couple of months ago after he turned two, and maybe my ducts were clogged or I was engorged. I decided to tell my doctor at my appointment the next day.

At my appointment, I mentioned the lump. He examined it, measured it, and sent me for a mammogram and ultrasound. The entire time I was telling myself this is fine. This is totally fine. My ultrasound tech, a young Black woman, finished my ultrasound and said she’d be right back. She returned with the radiologist, another Black woman. She explained to me that the lump was solid and that I’d need a biopsy because it looked serious. She asked me if I understood what she was saying to me, and I nodded silently. I scheduled the biopsy and left. Breast cancer? Me? No one in my family had ever had any type of cancer, let alone breast cancer. How could this be happening to me?

On the day of the biopsy, the radiologist was very kind and explained to me what a biopsy would show them. I still couldn’t believe this was happening, but I told her I understood. She said my doctor would call me to go over the results once they had them. I left that day feeling lost. The rest of the week, I tried to work as if everything was fine. This was completely normal; 35-year-old women get diagnosed with breast cancer all the time, right? But I didn’t know anyone under the age of 55 who had had breast cancer. At the end of the week, I got a call from the radiologist. She told me she didn’t usually call to personally give results, but my doctor was out of town, and she didn’t want to keep me waiting. She confirmed that it was breast cancer, that it was aggressive, and had already spread to my lymph nodes. I had prepared myself for the worst, and the worst was here. What she said next changed everything for me.

“You’ll need to advocate for yourself,” she told me. “They will tell you what to do and expect you to just go along with it, but you don’t have to. You advocate for yourself because no one else will. They will let you slip through the cracks if you don’t.”

And I’ve been advocating for myself since that day. My medical group sent me to an oncology office I didn’t feel safe with. The staff were rude and argumentative. I asked for genetic testing because I had no family history of cancer, but they brushed off my concerns, saying my treatment plan had already been made. I filed a complaint with the hospital patient advocate. I searched for the best cancer hospitals, and found City of Hope. I went to their website, found an oncologist I liked, and asked my insurance to refer me to him. My primary doctor said it “most likely wouldn’t get approved, because City of Hope was unnecessarily expensive.” I told him I would not go back to that oncologist, so I had to try. My request was approved, and I was referred for genetic testing by my new oncologist, Dr. James Waisman. I found out I was BRCA1+. He also told me I was triple negative, not ER/PR+ like the first oncologist told me. That changed my treatment plan significantly. Everyday I thank the cancer gods that I advocated to change oncologists.

When it came time for me to have reconstruction, I chose the DIEP flap (a surgery that takes tissue from your stomach and transfers it to form new breasts) with a plastic surgeon I’d never met before. I told Dr. Tan what size breasts I wanted. He measured and marked me up, took pictures, and we scheduled the surgery. It took 17 hours. I woke up and noticed how large my breasts were. I was assured that it was just swelling, that they’d go down. But they didn’t. I was stuck with misshapen breasts, one being larger than the other. I asked my plastic surgeon if he could reduce the size. He flatly said no.“Your breasts are proportionate to your body size.”

But I wasn’t happy. In April 2020, I scheduled a video appointment with Dr. Tan, and told him I’d come to a decision. I wanted an explant, and I wanted anaesthetic flat closure instead. He tried to talk me out of it.“It won’t improve your prognosis,” he said. I told him I didn’t care; my mind was made up. He said,“Certain clothes won’t look good on you anymore if you’re flat.” I told him,“I’ll look good in whatever I choose to wear, breasts or not. I’ve made up my mind. I want this.” We scheduled the surgery, and I was happy I was going to be comfortable in my body again. But I woke up from surgery still with small breasts. I was not flat. I asked Dr.Tan about it during my follow-up. He said he left me some breast tissue in case I changed my mind, because “all women want breasts.” I was livid. I told him that wasn’t his decision to make, I trusted him and he didn’t do what I asked. Once again, I went to a hospital patient advocate. I filed a complaint and asked to change surgeons. Two weeks later, I got a call that the head of plastic surgery had agreed to do the aesthetic flat closure. I scheduled the surgery with Dr. Anderson. This time, when I woke from surgery, I was much happier with the results. He said he’d do revisions if needed to get my chest how I wanted, and I was so happy I cried. After a couple of revisions, I’m now flat and happy.

In September 2022, a spot had shown up on a PET scan in my neck. My oncologist didn’t want to believe it was a recurrence. “You went into remission,” he said.“Your treatment worked.” But I told him we needed to take this seriously, we both knew statistically I was more likely to end up with MBC because I’m triple negative and have BRCA1. So he went to work. He pushed the hospital board to convince them the results were mine and no mistakes were made. A breast cancer recurrence in your neck? They’d never seen this before. But the pathology was mine, no doubt about it. I’m now on a daily oral chemotherapy that has been working for me so far.

I’m so glad that first radiologist told me to advocate for myself. If she hadn’t said that to me, I don’t think I’d ever have spoken up for myself. And seven years later, now living with metastatic breast cancer (the cancer came back in 2022, unfortunately), I am still advocating for my body. I advocate for myself when something doesn’t feel right, because only I truly know my body. I try to encourage other women to do the same. These are our bodies, and these are the only ones we’ve got. We have to take care of them while we’re still here.

Rethink is honoured to be the guest editor for Wildfire Magazine’s annual Metastatic Breast Cancer issue focusing on Advocacy.

^{This piece has been republished with permission from WILDFIRE Magazine, the “MBC Advocacy” issue issue, published originally October 19, 2024. More information available at  wildfirecommunity.org} 

^{WILDFIRE Magazine is the only magazine for young women survivors and fighters of breast cancer under 45 years old. Headquartered in Santa Cruz, California, WILDFIRE is a beautiful, story-based bi-monthly magazine published on different themes relevant to young women survivors, from stage 0 to stage IV. Beautiful and ad-free! Visit  wildfirecommunity.org for more info.}