- I have the BRCA2 gene mutation, which increases my risk of developing breast and ovarian cancer.
- Due to my BRCA status, I receive preventative screenings – but have recently fallen behind in my care.
- While editing articles on breast cancer, I had a mammogram and discovered my own cancer early.
Growing up, I loved to read and write. My parents were careful to teach my brother and me the value of money, but I also remember my father telling me that they would never refuse to buy me a new book. I sometimes wonder if he regretted that offer, the way I burned them.
Words were my thing – whether or not I made a career out of them didn’t particularly matter. But when I did an elective in college working on the school’s literary journal and was named editor-in-chief of fiction, there was no turning back. I fell in love with helping others improve their work.
I didn’t have a particular specialty until I found out in 2014 that I have the BRCA2 gene mutation, which means I’m more likely than those who don’t have the BRCA1 gene mutations or BRCA2 to develop both breast cancer and ovarian cancer.
It’s because of how I’ve learned to advocate for myself in health care—partly to get preventative cancer screenings and partly to get care for my chronic migraines and depression—that I decided to focus on my career. I got more serious about writing and editing in the health and wellness field. It may have saved my life.
I had to learn to be my own best advocate
About 13% of people assigned female at birth will develop breast cancer during their lifetime; In contrast, about 45% to 69% of people with the BRCA2 gene mutation will develop breast cancer between the ages of 70 and 80. The risk of ovarian cancer is also increased; The general population develops ovarian cancer at a rate of about 1.2%, while people with the BRCA2 mutation get it at a rate of about 11% to 17%. (For both cancers, people with the BRCA1 mutation have an even higher risk than those with the BRCA2 variant: about 55% to 72% for breast cancer and about 39% to 44% for lung cancer. ‘ovary.)
Because I’m still only 34, and the general recommendation for people without additional risk factors is to start having annual mammograms at age 40, almost every time I’ve called to schedule my preventative screenings over the past 8 years – one of the recommended pathways of care for people with the BRCA mutation, aside from prophylactic mastectomies and oophorectomies – I have received pushback. Time and time again I was told I was too young, even after mentioning my BRCA status and family history of cancer.
The author during a mammogram appointment in 2019.
Courtesy of the author
Concerns about the (rather low) dose of radiation a person is exposed to during a mammogram have been raised on several occasions, to which I always reply that I would rather that than not find cancer likely to develop early in my body. I never gave in or let them influence me, and the dates were always scheduled.
Since receiving my BRCA results in 2014, I have seen these appointments – along with the alternating breast and transvaginal ultrasounds that are also suggested as part of a preventative screening plan for people in my position – as another part of my wellness routine. . They’re just as typical to me as dental cleanings, and I’ve gotten into the habit of doing them regularly.
During the pandemic, I fell behind to take care of my health
Over the past decade and a half, as I have navigated the healthcare system to book appointments for my cancer screenings (as well as getting treatment for my chronic migraines and depression), I have learned a lot about defending my interests. I have used this knowledge in my work as well: it has enlightened me on how I work with people who have gone through similar things, and it has helped me come up with ideas for things to attribute and write about.
But when it comes to staying on top of my own care, I’ve fallen behind in scheduling my preventative appointments during the pandemic. Besides dealing with the pandemic itself, my personal life has become hectic in many ways. My grandmother passed away at the end of 2021, and my 8-year-old dog passed away this summer; Those two losses hit me like a truck, and I’m still processing them.
I also changed jobs and then tried my hand at freelancing. As my work situation changed, so did my insurance, and I was overwhelmed by the prospect of finding a new provider to take over my care. In fact, I’ve become overwhelmed in general. Everything that wasn’t emergent fell by the wayside.
Then I got hired for another full-time job as health editor, and edited a few breast cancer articles here and there. Before working on these stories, I had experienced that feeling you get when you think you’re forgetting something but you don’t know what. Finally I knew: I was there, working with writers on these articles about taking care of themselves, and I was terribly behind on my own care. I made an appointment to get a referral for a mammogram and breast ultrasound.
Even though I had never been afraid of mammogram results, something about this one felt different. Not the sensation itself; although it’s still a little uncomfortable, I don’t find it painful, and I make it a point to say this whenever I talk about mammograms to try to deny the narrative that they are to be feared and encourage others to protect care. But I just had this feeling that something was going on with my body.
The author during a mammogram appointment in 2022.
Courtesy of the author
I hadn’t noticed any changes in my breasts and I didn’t experience any symptoms related to breast cancer. I just felt like I knew something was wrong, somehow.
It turned out that I was right. The doctors called me back later that day and told me they wanted to do a follow up mammogram because they had seen calcifications behind my right nipple. I came back a few days later for this, and they reviewed the footage before I left the facility. The doctor recommended a biopsy.
I have breast cancer, and I am still dealing with this fact
I received the biopsy results three days later, on a sunny Monday afternoon. I was told I had ductal carcinoma in situ, or DCIS, “the best kind of breast cancer to have” (a “humble boast”, as my brother said when I told him).
I wasn’t sure how to handle it at the time, and honestly, I still am. Right after hearing the news, I called my mother. I called my partner. I texted my best friend. Then I sat down on the sofa and looked at the wall.
Because we caught it so early and I don’t feel sick, it’s been hard for me to know what to say to people. I feel like saying “I have cancer” is almost a lie, not because it’s not true – it’s true, I have cancer – but because of the image that ‘such a phrase often evokes. We caught it early, and I don’t want to worry people any more than necessary; I don’t even know how much to worry.
I’m young enough to recover well from surgery, 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 has 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 struck me yet that this is happening to me, that it’s not someone else’s life I’m looking at.
So far I have been strongly recommended to have a double mastectomy, which is the option I have chosen as opposed to a lumpectomy and radiation therapy. In my case, a mastectomy is both a treatment and part of prevention: it will treat the breast in which we found cancer and almost eliminate the risk that it will come back or that future breast cancer will develop.
Now I choose a surgeon and decide if I want to do a reconstruction or go flat – all things I take very seriously. To prepare for each meeting, I write down the questions I have in a notebook. If I don’t understand the doctor’s answer, I ask him to repeat it. I take notes as they talk, and no matter how many questions I have, I don’t feel bad for taking their time. Although I have some time to think about my options, I have been told that I should aim to have surgery no later than the end of January, so there is a bit of pressure to make big life decisions that I didn’t even have it on my radar two weeks ago.
It’s a lot to consider, but I’ll get through it, and I’m grateful for the support I have. I’m also so grateful that we caught this early and that I was proactive all these years that I was even able to catch something like this early. And yes, I’m grateful to the health care providers who have helped me along the way – but most importantly, I’m grateful to myself, for never letting my concerns be dismissed, and for being my best. attorney.
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