It Happened to Me: I Was Afraid of Developing Breast Cancer so I Took the Test for the Gene Mutation

It’s one thing to obsess over whether or not I’ll develop breast cancer but it’s a totally different thing to officially know my chances are high or damn near definite.
Publish date:
April 16, 2013
health care, Breast Cancer, breast cancer awareness

Even as a teen, I heard that breast cancer could be hereditary, although there was no direct history of it in our family before my mother had a mastectomy around 40 and succumbed to metastasized breast cancer at 46.

Neither my grandmother nor great-grandmother had it, both living until at least 80. But the pressure to constantly perform self-checks suddenly mounted. Every visit to the doctor –- primary care or gynecologist –- ended with the same conversation initiated by that checked “yes” on the questionnaire.

“Who in your family was diagnosed with breast cancer?”

“My mother,” I’d dryly say.

“Do you perform self-exams?”

My doctors liked to maintain eye contact on this one, looking for any signs –- averted eyes, hesitation, prolonged silence or a hint of a stutter -– of mistruth.

“Yes,” I quickly and confidently replied.

I perfected holding a gaze. I knew how to check myself, but I refused to out of fear of what I could possibly find. As long as I didn’t feel anything, it would never exist. And I’d have one less thing to worry about.

But then, as I was lying on my stomach one night, I did feel something.

The sensation was more discomfort than pain. I rolled over and gingerly touched the spot. It was round but not marble-hard. It appeared to move as I poked and prodded. Coincidentally, I was approaching a doctor’s appointment, so I waited to see if he could detect it, too. I hoped the foreign mass would simply disintegrate and disappear before then.

It didn’t. I remained still on the table in the paper-thin, baby blue gown, left hand behind my head, left breast exposed as my gynecologist chatted about nothing and moved three fingers in a quick circular motion within a larger circle. I waited.

“Can you feel that?”

For once, I didn’t evade. I didn’t lie.

I grew anxious, as I heard words like “high-risk,” “specialist,” “sonogram” and “mammogram” –- some words I had hoped not to hear before 30 or unless I was pregnant. I dressed, retrieved my referral slip from the reception desk and returned home to reluctantly schedule an appointment.

I found myself staring at, even admiring, my full breasts in the mirror. They were perky but heavy and dense, with tissue easily masking troubling spots on x-ray. Who knew how long those abnormal cells had been multiplying?

What if it really was cancer? Maybe a lumpectomy would suffice. I needed both breasts, maybe not for survival but more for superficiality. They were real, natural Ds, and screamed “woman.” They helped make my slender frame more feminine. And they were sensual, responsive to the slightest graze, almost always escalating to sexual.

I worried I'd never again experience wholehearted pleasure with only one breast or a reconstructed one. I wondered what man I would attract and keep with only one breast.

And what if I had to undergo radiation? Or worst yet, chemo. I’d never even worn a weave, let alone a wig.

But my incessant worries were for naught. I learned I was susceptible to cysts, which doctors aspirated with a needle, oftentimes three to four per breast. Side effects were a pinch and minor pain for cysts that resided nearer the breastbone. The fluid was sent to the lab for further testing and the results always came back negative for cancer cells.

As I approached 35, my gynecologist suggested that I schedule my first mammogram. My family history and disproportionate number of cysts were alarming. Yet it took me another year or two, when I returned for my annual exam and had to confess I hadn’t gone yet, to follow through.

Suffering through yet another round of family history questions, which was updated with the then recent diagnosis of my grandmother having ovarian cancer, I learned about the BRCA test or the breast cancer gene mutation test. The DNA test checks for the mutant gene found in hereditary breast cancer. And although it doesn’t indicate if or when a carrier will develop the disease, it helps doctors determine susceptibility and how often a patient should receive mammography and other screenings.

My specialist further explained that most insurance companies don’t cover the test but she felt I was a good candidate to receive it. She advised me to think about it. A paranoid person like me might not be able to handle the results. It’s one thing to obsess over whether or not I’ll develop breast cancer but it’s a totally different thing to officially know my chances are high or damn near definite.

“How is the test administered?” I asked without much hesitation. I had already made my decision.

She explained I could take a blood test or the “swish” test. The latter required me to rinse my mouth and spit the solution back into a cup. I opted for the latter.

I had to wait an hour because I chewed gum and remnants of anything in the saliva could skew the results. I called a friend to pass time.

“Are you fucking crazy?” my friend asked. “Why’d you wanna do that? I’d just wait and take my chances.”

Apparently I wasn’t the only one who preferred to hide from cancer. But the thought of it scared me so much that I didn’t want to wait if I didn’t have to. I told myself it was no different from a pap smear. That detects cancerous cells, too, right? And I had never skipped that exam no matter how uncomfortable or humiliating it was. So I dismissed opinions from the test-shunners.

I returned to the examination room and tilted the Scope-like concoction to my head before leaving the doctor's office.

And although I resumed my admiring-my-breasts-in-the-mirror routine, I was the least bit scared when I finally received that phone call.

“I have great news! The test detected ‘no known mutation!’”

But the nurse added the specialist wanted me to still schedule a follow-up sonogram (Or is it ultrasound? I confuse the two.) and mammogram every six months to monitor a cyst that was a little too deep to be digging around with a needle. Had the results been positive, I would’ve definitely been subjected to semi-annual mammograms.

I still have the cyst, which sometimes feels more prominent depending on the day or week. I now know because I check. Unfortunately, my mother wasn’t privy to such techniques and didn’t have the benefit of regular screenings. Although today’s tests are intimidating and not quite definitive, they offer some insight into the future state of my health.

They also present a wave of relief whenever I think of maintaining my physical appearance. Granted, life is more valuable than aesthetics, and breasts aren’t synonymous with beauty. But I don’t want to be in a position to have to choose between living and just being.

So if that means aggressive testing, I’m game.