Health editor has breast cancer, needs to advocate for care

  • I have a BRCA2 gene mutation that increases my risk of developing breast and ovarian cancer.
  • Because of my BRCA status, I get checkups — but recently I’ve 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. Sometimes I wonder if he regretted that suggestion, since I was burning them.

Words were my thing—whether I was going to make a career out of them or not didn’t really matter. But when I took a faculty position in college working on the school’s literary magazine and was made fiction editor, there was no turning back. I fell in love with helping others make their work better.

I didn’t have a specific specialty until I learned in 2014 that I have a BRCA2 gene mutation, which means I have a higher chance than those without BRCA1 or BRCA2 gene mutations of developing both breast and ovarian cancer.

I decided to focus my career because of the way I learned to advocate for myself in the healthcare field—partly fighting for cancer screenings and partly for care for my chronic migraines and depression. I started writing and editing more seriously in the health and wellness field. It might 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 in their lifetime; in contrast, about 45% to 69% of those with a BRCA2 gene mutation will develop breast cancer by the time they are 70 to 80 years old. The risk of ovarian cancer also increases; the general population develops ovarian cancer at a rate of about 1.2%, while those with a BRCA2 mutation get it at a rate of about 11% to 17%. (For both types of cancer, those with a BRCA1 mutation are at even higher risk than those with the BRCA2 variant: about 55% to 72% for breast cancer and about 39% to 44% for ovarian cancer.)

Since I’m still only 34 and the general recommendation for people with no additional risk factors is to start getting annual mammograms at age 40, almost every time I’ve called to schedule screenings over the past 8 years — one of the recommended lines of care for those with a BRCA mutation, aside from prophylactic mastectomies and oophorectomies — I was hit back. I have been told time and time again that I am too young, even after mentioning my BRCA status and family history of cancer.

The author of the 2019 Mammogram Class

The author of the 2019 Mammogram Class.

Courtesy of the author

Concerns about the (relatively small) dose of radiation a person is exposed to during a mammogram have been raised many times, to which I always respond that I would prefer that to not detecting a cancer that may be developing in my body early. I never gave in or let them sway me, and appointments were always made.

Since receiving my BRCA results in 2014, I’ve seen these appointments—as well as the alternating breast and transvaginal ultrasounds that are also recommended as part of a preventive screening plan for those in my position—as just another part of my wellness routine . They are as typical of me as brushing my teeth and I am used to doing them regularly.

During the pandemic, I fell behind on my health care

Over the past decade and a half, as I’ve navigated the health care system to make appointments for my cancer screenings (as well as get treatment for my chronic migraines and depression), I’ve learned a lot about self-advocacy. I have also used this knowledge in my work: it has informed how I work with people who have been through similar things and helped me come up with ideas for things to commission and write.

But when it comes to self-care, I’ve fallen behind on scheduling my preventive appointments during the pandemic. In addition to 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 dog ​​of 8 years passed away this summer; both losses hit me like a truck and I’m still processing them.

I also changed my job, after which I tried my hand at freelancing. As my employment situation changed, so did my insurance, and I was overwhelmed with the prospect of finding a new provider to take over my care. In fact, I became crushed in general. Anything that wasn’t urgent was dropped.

After that, I was hired into another full-time job as a health editor and edited a few articles here and there about breast cancer. Before working on these stories, I had that feeling you get when you think you’re forgetting something, but you’re not sure what. I finally got it: here I was, working with writers on these self-care articles, and I was way behind on my own care. I made an appointment for a referral for a mammogram and breast ultrasound.

Although I’ve never been afraid of mammogram results, something about this one felt different. Not the sensation itself; although it’s always a little uncomfortable, I don’t find it painful and I make it a point to say it whenever I talk about mammograms to try to dispel the narrative that they should be feared and encourage others to get them of preventive care. But I just felt like something was happening to my body.

The author of the 2022 mammogram class.

The author of the 2022 mammogram class.

Courtesy of the author

I hadn’t noticed any changes in my breasts and I wasn’t experiencing any symptoms associated with breast cancer; I just felt like I knew something was wrong, somehow.

I turned out to be right. The doctors called me later that day and told me they wanted to do a follow-up mammogram because they saw calcifications behind my right nipple. I went back a few days later for this and they reviewed the images before I left the facility. The doctor recommended a biopsy.

I have breast cancer and I’m still processing that 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 there is” (“modest praise,” as my brother put it when I told him).

I wasn’t sure how to process it at the time, and honestly still am. Right after I heard 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 was 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—yes, I really do have cancer—but because of the image that a sentence like that often conjures up. 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 to recover well from the surgery, but also young enough that I have 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 I’ve really figured out yet that this is happening to me, that I’m not looking at someone else’s life.

By now it was strongly recommended that I get a double mastectomy, which is the option I chose over a lumpectomy and radiation. In my case, a mastectomy is part treatment and part prevention: it will treat the breast in which we found cancer and almost eliminate the risk of recurrence or future development of breast cancer.

Now I’m choosing a surgeon and deciding whether I want to have reconstruction or go problem-free – all things I take very seriously. To prepare for each meeting, I write down questions I have in a notebook. If I don’t understand the doctor’s answer, ask them to repeat it. I take notes as they speak, and no matter how many questions I have, I don’t feel bad about taking their time. Although I have some time to consider my options, I have been told that I should aim to have the surgery no later than the end of January, so there is a bit of pressure to make some big life decisions that I haven’t even had on my radar before two weeks.

It’s a lot to take in, but I’ll get through it and I’m grateful for the support I have. I’m also so grateful that we caught it so early and that I was proactive all these years so I was even able to catch something like this early. And yes, I am grateful to the health care providers who help me along the way – but most of all, I am grateful to myself for never allowing my concerns to be dismissed and for being my best advocate.

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