- I have the BRCA2 gene mutation, which increases my risk of developing breast and ovarian cancer.
- Because of my BRCA status, I get preventive screenings — but I recently fell behind in my care.
- While editing articles about breast cancer, I got a mammogram and found my own cancer early.
Growing up, I loved reading and writing. My parents were careful to teach my brother and me the value of money, but I also remember my dad telling me they’d never say no to buying me a new book. I wonder sometimes if he regretted this offer, the way I burned through them.
Words were my thing — whether I’d make a career working with them or not didn’t particularly matter. But when I took an elective in college working on the school’s literary journal and was made the fiction editor, there was no turning back. I fell in love with helping others make their work better.
I didn’t have a particular specialty until I learned in 2014 that I have the BRCA2 gene mutation, which means I have a higher chance than those without either the BRCA1 or BRCA2 gene mutations of developing both breast cancer and ovarian cancer.
It was because of how I learned to advocate for myself in the healthcare arena — partially fighting to get preventive cancer screenings and partially to get care for my chronic migraines and depression — that I decided to focus my career. I got more serious about writing and editing in the health and wellness realm. It may have saved my life.
I had to learn to be my own best advocate
About 13% of those assigned female at birth will develop breast cancer over their lifetimes; in contrast, about 45% to 69% of those with the BRCA2 gene mutation will develop breast cancer by the time they’re 70 to 80. The risk of ovarian cancer is also increased; the general population develops ovarian cancer at a rate of about 1.2%, while those with the BRCA2 mutation get it at a rate of about 11% to 17%. (For both cancers, those with the BRCA1 mutation are at an even higher risk than those with the BRCA2 variant: about 55% to 72% for breast cancer, and about 39% to 44% for ovarian cancer.)
Because I’m still only 34 and the general recommendation for people without additional risk factors is to start getting yearly mammograms at the age of 40, nearly every time I’ve called to schedule my preventive screenings over the past 8 years — one of the recommended routes of care for those with the BRCA mutation, aside from prophylactic mastectomies and oophorectomies — I’ve received pushback. Time and again I’ve been told I’m too young, even after mentioning my BRCA status and family history of cancer.
Concerns about the (fairly small) dose of radiation a person is exposed to during a mammogram have been raised multiple times, to which I always reply that I’d prefer that over not finding cancer that may be developing in my body early. I never gave in or let them sway me, and the appointments were always scheduled.
Since receiving my BRCA results in 2014, I’ve seen these appointments — as well as the alternating breast ultrasounds and transvaginal ultrasounds that are also suggested as part of a preventive screening plan for those in my position — as just another part of my wellness routine. They’re just as typical for me as dental cleanings, and I have gotten used to making them regularly.
During the pandemic I fell behind on taking care of my health
Over the last decade and a half, as I’ve navigated the healthcare system to make appointments for my cancer screenings (as well as to get treatment for my chronic migraines and depression), I’ve learned a lot about advocating for myself. I’ve also used that knowledge in my job: It has informed how I work with people who’ve been through similar things, and it’s helped me come up with ideas for things to assign and write.
But when it comes to staying on top of my own care, I fell behind on scheduling my preventative appointments during the pandemic. In addition to dealing with the pandemic itself, my personal life got hectic in numerous ways. My grandmother passed away in late 2021, and my dog of 8 years passed away this summer; both of these losses hit me like a truck, and I’m still processing them.
I also switched jobs, then tried my hand as a freelancer. As my employment situation was in flux, so was my insurance, and I became overwhelmed with the prospect of finding a new provider to take over my care. In fact, I became overwhelmed in general. Anything that wasn’t emergent fell by the wayside.
Then I was hired for another full-time job as a health editor, and I edited a few pieces about breast cancer here and there. Before working on these stories, I’d been experiencing that feeling you get when you think you’re forgetting something but you’re not sure what. Finally I knew: Here I was, working with writers on these articles about taking care of themselves, and I was woefully behind on my own care. I made an appointment to get a referral for a mammogram and a breast ultrasound.
Though I’d never been scared of mammogram results, something about this one felt different. Not the sensation itself; while it’s always a bit uncomfortable, I don’t find it painful, and I make it a point to say this whenever I’m talking about mammograms to try and negate the narrative that they’re to be feared and encourage others to get preventive care. But I just had this sense that something was going on with my body.
I hadn’t noticed any changes in my breasts, and I wasn’t feeling any symptoms related to breast cancer; I just felt like I knew something was off, somehow.
I turned out to be right. The doctors called me back later that day and told me they wanted to do a follow-up mammogram because they saw calcifications behind my right nipple. I came back a few days later for that, and they reviewed the images before I left the facility. The doctor recommended a biopsy.
I have breast cancer, and I’m still processing this fact
I got the results of the biopsy three days later, on a sunny Monday afternoon. I was told I have ductal carcinoma in situ, or DCIS, “the best kind of breast cancer to have” (a “humble brag,” as my brother said when I told him).
I wasn’t sure how to process it then, and honestly I’m still not. Just after getting the news, I called my mom. I called my partner. I texted my best friend. Then I sat on the couch and stared at the wall.
Because we caught it so early and I don’t feel sick, it’s been hard for me to even know what to tell people. I feel like saying “I have cancer” is almost a lie, not because it’s not true — it is, I do have cancer — but because of the image a sentence like that often conjures. We caught it early, and I don’t want to worry people more than necessary; I don’t even know how much to worry, myself.
I’m young enough that I’ll recover from surgery well, but also young enough that there’s so much life ahead of me, and given my BRCA status and the fact that we’ve already found cancer, that means there’s just more time for DCIS or another form of breast cancer to come back. It’s a lot to digest — I don’t think it’s really hit me yet that this is happening to me, that it’s not someone else’s life I’m looking in on.
So far, it’s been strongly recommended that I get a double mastectomy, which is the option I’ve chosen as opposed to a lumpectomy and radiation. In my case, a mastectomy is part treatment and part prevention: It’ll treat the breast we’ve found cancer in and nearly eliminate the risk of it coming back or of future breast cancer developing.
Now I’m choosing a surgeon and deciding whether I want to do reconstruction or go flat — all things I’m taking very seriously. To prepare for each appointment, I write down questions I have in a notebook. If I don’t understand the doctor’s answer, I ask them to repeat it. I take notes while they’re talking, and no matter how many questions I have, I don’t feel bad about taking their time. While I have some time to think about my options, I’ve been told I should aim to have the surgery no later than the end of January, so there’s a bit of pressure to make some big life decisions I didn’t even have on my radar two weeks ago.
It’s a lot to consider, but I’ll get through it, and I’m thankful for the support I have. I’m also so thankful that we caught this early and that I was being proactive all these years so that I was even in a position to catch something like this early. And yes, I’m grateful for the healthcare providers helping me along the way — but most of all, I’m grateful to myself, for never allowing my concerns to be dismissed and for being my best advocate.