(Personal Essay) Life of a 26-year-old BRCA Mutant

One of my personal goals for the last few months has been to write a personal essay and submit it for publication. This is my first. I submitted it to NYT Opinion and Buzzfeed. Though I planned to submit it to more places, if it’s not published a month after I finish it, I want to publish it here. 

There are no breast cancer screenings for a 26-year-old, unless, of course, that person is me. Two years ago, I sat in a clinic in Seattle, waiting to hear the results of my BRCA-2 mutation test. I had a 50% chance of being positive, thanks to a gene on my mom’s side that led to her diagnosis of breast cancer at 42. Even as the blood slipped from my veins, to be shipped to my home state of Utah for the genetic test, I believed that I was part of the lucky 50%, the ones that had no mutations. But now I have a piece of paper that reads in bold across the top POSITIVE FOR A DELETERIOUS MUTATION.

Every time I visit the doctor, I feel like these bold-face words are branded across my forehead.

They do make me different. The documentation reads “this type of mutation in high risk families indicates that … (my mutation) may confer as much as an 84% risk of breast cancer and 27% risk of ovarian cancer by 70 in women.” Over the last two years, I have breathed in this information and it hasn’t suffocated me yet. But it does commit me to completing all the screenings that my doctors recommend.

To address this increased risk, my doctor gave me a “personalized” screening procedure to guide the rest of the my life. At 25, I was to begin MRI breast screenings. My doctor did not recommend mammograms until the age of 30. She also provided a set of unpleasant sounding screenings for ovarian cancer that would also commence at age 30. From that moment, I felt as if I had stepped away from my group of friends, normal women that would laugh about mammograms and menopause at about the same time. Instead, after I finished having kids, whenever that would be, I would be deciding if I should remove parts of my female body or not.

But, for now, I’m 26 and childless, subject only to the MRI screenings until age 30. Three months after my 25th birthday, I called my doctor to request an MRI. Three weeks later after my request, I opened a short letter saying that my request was not approved. In a panic, I called the cancer doctor to ask about the problem. Her nurse calmly explained that it had been approved. But I was still nervous about the letter that I held in my hands. Two days after the phone call, another letter in my mailbox said that the MRI was approved. This confusion, possibly due to my age, seems to be a new factor in my health care.

I endured the widened eyes as I approached the front desk for the MRI center. Yes, I am sure that I am supposed to be here. As I waited in a tiny room with only a backwards hospital gown for covering, I watched a parade of people two or three times my age pass by. Finally it was my turn for 45 minutes in the clanking, pressing environment that is an MRI machine. After the MRI, I found it strange that my experience was shared with my parents. I could call them and they would understand the failure of the music system to block out the racket. But my dear boyfriend might not know what that was like for another decade or two, if at all.

Weeks later, I opened my bills to find a charge for $1000. It threw me for a loop. I thought that my screening was preventative and therefore should be covered by my insurance. My limited knowledge of the Affordable Care Act made me think that it should be covered. It was like a mammogram for 25-year-olds, in my mind, why wasn’t it free?

A quick Google search told me that mammograms were included in the Affordable Care Act preventative screenings, but this didn’t help me. MRI’s were not even mentioned. I looked into mammograms in more detail, telling myself that I was preparing for my 30th birthday. The whole system of mammography is built around people starting screening at 40 (the normal age). There is not even consensus starting screening at 40 because there is a high rate of false positives. When my doctor introduced my mammogram screening to me, she prepared me by warning about exploratory biopsies. Apparently, younger breasts are even more likely to get false positives. I’m not optimistic avoiding the biopsies; multiple blunt doctors have labeled my boobs as “lumpy.”

Now I wasn’t not even sure that my lumpy boobs will get a “free” (health insurance covered) mammogram at age 30. The Affordable Care Act requires insurance coverage of mammograms. Yet, reading closely, the wording does state “mammograms starting at age 40.” Depending on my health insurance, I may have to pay for these mammograms for 10 years before the legalese includes me.

I began to panic. If neither mammograms nor MRI’s were covered for me, how would I pay for the screenings that could save my life?

I was determined to convince the insurance company that I shouldn’t have to pay for preventative MRIs. I emailed my company’s health insurance provider. That was the first time that I had written out that I was BRCA-2 positive and it made me sad. I hoped that at least it would save me some money. But it seemed fruitless. No one would accept my argument that MRI’s are a screening. Apparently, MRI’s are always diagnostic, a law writ in stone.

I was disheartened. I didn’t even ask about mammograms, leaving my 30-year-old self to deal with it in the future.

I paid the $1000 with some regret, totaling the cost of doing this for the next 30 years, as my screening protocol recommended. $30,000 is a lot of money. This thought has rung in my head since then. It sang as I quit my job with excellent health insurance to pursue my dream of writing. It rang when I picked the only health plan I could afford, with a $6000 deductible. A small part of me clenched this February, when I was supposed to get my MRI, but I didn’t, because I couldn’t see how to afford it.

Knowing that I have a BRCA-2 mutation can be empowering. Rather than wander through the unknown, I was given a protocol that would likely save my life. But I lack the resources to make it happen. Some of the lack it is money. None of my peers put money away every year for health costs, so I honestly didn’t think of it as an option. Some of the lack is support. Laws are designed to help the many, the millions of women in the United States that may need mammograms at age 40. But I am part of the few, the young people that found out about their mutation through their parent’s diagnosis and genetic test.

There is no space for us in the current system…yet. I believe that we are just starting to feel the impact of genetic testing. For years, it has verified what was already believed, that some people with cancer had a genetic mutation. Now genetic testing has opened up a new door. Children can be tested for the mutations of their parents. This knowledge can save lives – if the additional screenings can be offered at a cost that a 26-year-old writer/Uber driver can pay.