I Had To Know: Why I Had My Genes Tested

Science was not my thing in high school. I barely passed biology, which was the only science requirement for graduation at my school at the time. We had a brief and extremely painful unit on genetics as part of that class. Here’s the only thing I took away from it: Those DNA strings would make pretty bracelets.

But when my mom made the decision a few years ago to get tested for the Alzheimer’s gene, jewelry was the last thing on my mind.

We had spent many slow, sad years watching her father shed his conscious life like a snake skin, leaving behind a new man, for sure.

Did you know that when a snake is shedding, its eyesight is also affected? According to Wikipedia, the skin over its eye can become milky, which impairs its vision. This leaves the snake feeling more vulnerable (like, duh!), which flips the aggressive switch in its brain.

And that’s exactly what happened to my grandfather. Everyone was the enemy and out to harm him in some way. It was after he pushed my grandmother when she tried to stop him from going out for a drive in the middle of the night that we knew something was seriously wrong.

Luckily, my mom doesn’t have the gene. But it’s the comforting words of her medical provider that stick with her: Not having the gene doesn’t mean you won’t get Alzheimer’s.

Thanks for nothing.

I faced a similar choice a couple of years ago. Breast cancer runs on my mom’s side of the family. They get the best diseases. During my annual lady visit, my doctor and I talked in-depth about my family history and how that, along with the age at which I had my first/only child, increased my risk for developing breast cancer.

She told me about genetic testing for the BRCA genes. If a woman has one of the two BRCA genes, her chances for developing breast and/or ovarian cancer greatly increase.

Jewelry wasn’t on my mind when we were having this discussion either.

Instead, I thought of a woman I’d once worked with who had died in her thirties after a multi-year fight with breast cancer.

I’ve always been a person who like surprises—I never peeked at my Christmas presents as a child, never skipped to the last page of a book or the final scene on a DVD, and never once considered finding out the sex of my baby when I was pregnant.

But this was one surprise I was willing to forgo if it meant I might be granted the gift of a few extra candles on my birthday cake.

Photo Credit: The James Kendall via Compfight cc

Photo Credit: The James Kendall via Compfight cc

Everyone knows about Angelina Jolie’s very public decision to have a preventative double mastectomy because she carried the BRCA gene. And just a few days ago, a close friend of my husband’s family chose the same route because she also carried the BRCA gene.

So when my doctor and I talked about my options if I had the gene, my first thought was, “Now, let’s not cut off my breasts to spite the rest of my living body.”

But my second thought was, well, kind of twisted.

That would solve two problems: Decrease my risk of breast cancer while increasing the size of my smallish breasts. Sweet!

It was the fear of dying like my relatives and former co-worker, and the agony of picturing my daughter growing up without a mother that made me go through with the testing.

It took weeks for the results to come back, after spending about the same amount of time convincing my insurance provider that I had a need to be tested, of course.

Many times while I waited I wondered if I’d made a mistake. Did I really want to know? Because once I knew, I had to make a decision. Even choosing to do nothing, other than regular screenings, would still be a decision.

I was afraid that if that’s what I chose, and the cancer monster snuck under the bed of my breast tissue in between screenings, I would never be able to forgive myself for not being “braver” and going through with the surgery.

And like with my mom and the Alzheimer’s gene, my doctor told me that even if I didn’t have the BRCA gene, I still had an increased risk of developing breast cancer because of my family history and older child birthing age.

The normally optimistic me could only see the glass as nearly empty.

I’ll cut to the chase: I don’t have the gene. But my risk of getting breast cancer is about 25% higher than the rest of the average population, which is around 12%.

Math tied with science for my least favorite subject in school, but I think that’s a 37% chance…

So I take extra precautions. In addition to an annual mammogram, I alternate with a breast MRI, per my doctor’s advice. Which means I get the once-over every six months. Yay.

I’ve thought a lot about the choice to find out potentially life-altering information and what people do when they have it. So much so that it’s the main theme of my current work-in-progress, a YA novel tentatively titled The Knowers.

I’m not about to judge others’ choices to find out or not. Choice in nearly all instances is best left to the person who knows best: The one doing the choosing. And I don’t know if I’ll get tested for any other genetic time bombs.

What I do know is that I’m grateful to live in a time where this choice exists.

Yes, it makes life a lot more complicated and confusing. Like, do we really need one more option—exactly how many f-ing brands of toilet paper (or dog collars) would make our lives complete?

Photo Credit: zhouxuan12345678 via Compfight cc

Photo Credit: zhouxuan12345678 via Compfight cc

And what about genetic testing on embryos and fetuses? I’m not touching that with a six-foot, uncoiled DNA molecule pole.

But this kind of choice also gives us some control over our fates, or at least the perception of control.

And that’s good enough for me.

So what about you? Have you made a genetic-testing choice, and if so, what did you decide to do–and what did you do once you had your results? What type of testing do you wish was available?

2 thoughts on “I Had To Know: Why I Had My Genes Tested

  1. Ugh. That must have been a pretty tense two-week wait. Kudos to you for having the guts to get tested in the first place. I’m really glad you don’t have the gene. I was nervous reading that.

    As I get older, or maybe just as I get more and more uninsured, I seem to put everything off. Including the yearly fun visits. I have trained myself not to think about the what ifs because I’m not in a position to be able to afford them right now, so I have to leave it up to God, the universe, the dust in the air, whatever or whomever decides my greater fate to keep me safe from harm. Yes, I am the ostrich. Head firmly planted in ground right now. Ridiculous, I know. I was never this way before, I was diligent about my health and my check-ups, and maybe I just got tired of being so diligent about everything in my life. Hopefully I’ll get back to that at some point.

    Not a responsible answer from a grown woman, I know, but it’s the ugly truth at this particular moment in time for me.

    Thanks for sharing your experience, Kel. I’m glad you know and I hope it gives you some comfort.

    1. I was pretty glad too!

      And you know, we’re all going to die of something. The best we can hope for is to extend our life, wrapped in a nice quality blanket. I know that might sound morbid, but I think that thought is freeing, when you let it be.

      OK, this is going to make me sound old, but sometime you have to watch this 60 Minutes episode about living into our 90s. I watched it and thought, you know as long as I got a little more exercise and had a drink every so often, things are going to work out just fine.

      Think of it this way (and again, apologies for the morbidity): Let’s say you’d never put your ostrich head in the sand and continued with the diligent monitoring of your health. Then one day, as you’re walking out of your doctor’s office with your latest all-clear test results, you get hit by a car and are killed. So, how did all of that diligence work out for you? In that scenario, your ostrich head in the sand would have been the better choice.

      You do what you can, when you can, especially the stuff that’s cheap or free (and there’s a lot of that mentioned in the video), and then you enjoy every frickin moment.

      You’ll be golden, my dear, no matter what.

      Thanks for reading, Kel—much appreciated!

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