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Every Fucking Time: A story about genetic testing.

An interview with someone who learned about a potential genetic risk for cancer. She talks about what changes after she found out, and what didn't.

Published onAug 06, 2019
Every Fucking Time: A story about genetic testing.
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Intro.

I led this interview with someone who took a genetic health test that her workplace offered. She has a family history of cancer. So, I was curious about what she wanted that she didn’t already know.

Her results suggested that she might have a higher risk of getting colon cancer. I was also curious about what it's like to get this kind of news. These results don't mean she will get colon cancer, but it still seems scary. Then again, these results could also be a helpful tool. I wanted to learn more about this mix of emotions.

I included her story in this zine because her experience might be more common in the future. If genetic health info becomes more common, others will likely face similar emotional journeys. This story is a look into the future that precision medicine might help create.

-Samuel R. Mendez


Interview.

Why did you take the specific genetic test you did?

The only reason I did this particular test... [my employer] was offering it for free. In some way I was probably putting too much faith in them. If they're making this available to people for free, they must have done their due diligence that this is a reliable [genetic testing] company.

What happened when you received the test results?

You book an appointment [with someone to] walk you through the results. So when she was walking through it, it was kind of a shock. It's kind of how I imagined a cancer diagnosis to be.

Pull Quote: “I imagine it’s for the better. And anything you can do to improve your life is probably better, but not if it causes a lot of stress too.”

She said, okay, here is your mutation, specifically with this gene. Let’s say the average population has a 10% chance of developing [colon cancer]. For those with this mutation, it's maybe 80%. She was very clear, though, to say that these were groups of people. It was not specifically me. That was very comforting of her just to say this doesn't mean it's going to happen. She did say there was a specific department at [a local hospital] that focuses on cancers based on mutations in genes. She gave me the name of a specialist doctor/researcher in gastroenterology.

What kind of sucked is before I learned the test results, I had just changed my insurance provider. So I couldn't see the recommended GI specialist till the following year. I decided to wait till then to get a colonoscopy and deeper diagnosis. It was a bit of a relief to put it off, but also caused some anxiety. Who knows what could develop in a year’s time untreated? A close friend had recently passed away within months of discovering she had stage four cancer - and it caused me to question how much getting more tests done immediately versus later mattered.

With that feeling hanging over me, I decided even though I would wait to see the GI specialist, I might as well still get my annual physical done to know what baseline “healthy” looks like for me. His reaction to the gene testing was kind of skeptical. He was kind of like, “You know, those tests, they're only so accurate, right? There's not a lot of sound research behind them… You know, [our hospital] also has that kind of program,” and blah, blah, blah. He wasn't putting a lot of faith behind it, I guess and I was a little biased [when I heard that]. He’s not working in a specialty hospital, right? You go there for your annual physical and that's it.

After a year passed, I was eligible to switch insurance providers and could see the GI specialist. It’s been a few months and I haven’t scheduled it yet... but I plan to.

How did you feel after receiving the test results?

For the first few months, I was a little paranoid… I went to a comedy show and [the performer] was saying she loves to eat popcorn. And her father died of colon cancer. Her doctor told her to stop eating so much popcorn because it messes with your colon, or something like that. And I remember that moment just being like, “Fuck! That's kind of like me, right?” Those are things that I should probably be looking out for.

Illustration description: a woman looks at a giant box of fresh popcorn performing on stage in front of a microphone. Credit: Annie wang.

I think my fear with some of the cancer stuff is that the people I know [who have had cancer], I don't think it was something they were or weren't doing about their health. My aunt who died of lung cancer was not a smoker. She lived in Hong Kong, so it was probably her environment. But there are millions of people who live in Hong Kong without getting lung cancer. My mother with a brain tumor... there was probably nothing that she was or wasn't doing to cause that. Both of my grandfathers had prostate cancer. So is it bound to happen no matter what I do? How much control can you really have over it?

Have your genetic test results made you think differently about the future?

I think had [my friend not gotten cancer], I wouldn't have felt such a need to take the test right then. I think her situation pushed me to do it a little bit sooner, even [change] some of the ways I'm living my life in general.

Let's say I do get colon cancer and I have to step away from everything I know. Will I be most disappointed that I didn't get promoted? Or disappointed that I won't be able to spend time with family and friends? Or mad at myself for not taking better care of myself?

I’m in my late twenties now. And people are getting married and they're having kids and all that stuff… If I have kids, am I passing on bad genes? If I don't have kids, it's kind of the end of my family line. [But] I may be saving a child from having a lot of issues...

I feel like I'd be asking some of these questions regardless of the test though. I feel like it was just like a quarter life crisis that came up. And I think it's more related to [the death of my friend] than to the [genetic test results].

Overall, do you think your genetic test results had a positive or negative impact in your life?

The popcorn example… every time I eat popcorn, I question if it’s causing colon cancer. I still eat it. But I question it every fucking time now. I used to have acid reflux. I blamed it on my birth control more than anything. Now when things like that happen, it does scare me a little bit. Like, my stomach's upset. Is this something?

It also kind of distracts me from other things. I don't think about skin cancer anymore. It's almost like colon cancer's going to get me first. Heart disease is probably a more common killer than colon cancer. Am I worried about the amount of meat I’m eating or my cholesterol or anything? No. Am I worried about popcorn in my colon? Yes.

I imagine it's for the better. And anything you can do to improve your life is probably better, but not if it causes a lot of stress too. So I don't know. I do kind of feel like I should take [another test] though. I would probably pay for it. I don't think I would have paid [for my genetic test] had [my employer not offered it for free].


Notes.

This interview is anonymous because it includes sensitive health information. The original interview is much longer than this article. I transcribed it and edited it down to this current length. I also broke up long passages into the short sections you see above. Once I finished editing, I sent it to the interviewee for her review, edits, and approval.

-Samuel R. Mendez

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