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Should I do genetics testing or just start obsessively worrying on my own?

By Karen McBoob on January 9, 2016 in Blog, Featured Articles, Humor
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Alternate title:

Can thinking about genetics testing give you a brain tumor?

Per my breast surgeon’s recommendation, I went to see a genetics counselor. So, the main thing I learned about genetics testing is that I don’t want to do genetics testing.

The counselor recommended two panels of tests. The first was for the BRCA gene mutation that is linked to breast and ovarian cancers. About one in forty individuals of Ashkenazi Jewish heritage has this mutation. I don’t know how many individuals out of forty are of Ashkenazi Jewish heritage, but if the group of individuals you are counting includes me, then at least one. (And I know, right? What the fuck, BRCA gene? Why are you being so shitty to Jews?)

The second was to get tested for Lynch Syndrome, which increases the risk of many cancers. Most notably for me, colon and ovarian cancers, because one of my mom’s sisters had colon cancer and another had ovarian cancer (ovarian being the rarer of the two). But Lynch Syndrome also increases the risk for cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, and skin. (Yeah … eff yoo, too, Lynch Syndrome, you over-achieving, cancer-causing hiney hole.)

When it came to BRCA testing, I thought I was in the clear since two aunts on the Jewish side of my family already tested negative. I was wrong. I am anything but “in the clear.” A bit closer to being “in the cloudy,” really, and just a hop, skip, and a lump away from being “in the terribly gloomy.” Not only might I still have the mutation, but even worse, they might still have the mutation that they tested negative for. (Or, if you want to be a pedantic grammar Nazi about it: “the mutation for which they had tested negative,” and yes, I get how inappropriate it was to use the term Nazi here. I realized that right after I typed it). There’s now a more comprehensive test for BRCA, called BART, and goddammit, science! First you tell women “You don’t have the BRCA mutation.” Then ten years later, you’re like, “Just kidding, you might have it. We weren’t totally sure before. At least you had a few years when you weren’t worried about your lady parts trying to kill you, though – amirite?” Fuckin’ hurrah for genetic testing. Misleading women since 1996. Well, alright, I’m being a bit harsh. Earlier genetic testing only lied to “about 12 percent of patients at very high risk of hereditary breast and ovarian cancer” by telling them they tested negative when they actually had the mutation.

If I tested positive for BRCA, I’d need to consider removing my ovaries. No problem. That’s already been done, thanks to a little operation I had last year called an open abdominal hysterectomy. This was due to a ginormous ovarian tumor that the doctor thought might be cancer, but that turned out to be benign. So, ha! In your face, BRCA mutation! You can’t screw up my ovaries, because I haven’t got any. I’m also already being monitored closely for breast cancer (a radiologist is looking at my boobs every six months via either an MRI or a 3D mammogram), so according to the genetics counselor, the only other thing that might go back on the mitigate-my-cancer-risk list, in case I tested positive for BRCA, would be a double prophylactic mastectomy. A prophyl- what’s that you say? A mastecto-Ho boy. That’s what I thought you said. I’m still a little shattered from going through open abdominal surgery in May, then a second lumpectomy this past September. (My hospital should hand out customer loyalty punch cards, so eventually, you can earn a free core needle biopsy or a transvaginal ultrasound.) I’d like to get over my PTSD flashbacks from all the procedures I had last year before I begin thinking about additional major surgery that comes with its own risks and potentially scary complications.

When it came to Lynch Syndrome, the upshot was that, if I tested positive, I’d need to get colonoscopies earlier and more often, and also endoscopies at least every three years. (Good Gawd, what is wrong with these people? Always with the invasive testing. Can’t I just swallow a GoPro camera or something?) I’ll confess that I have anxiety issues, and that medical procedures scare the living crap out of me (that was not a euphemism for the colon prep I had to do before my hysterectomy, though it might have been), but testing positive for Lynch Syndrome would also mean I have a high risk of getting many cancers for which there is currently no screening available! So, um … yeah … can someone please tell me how genetics testing is going to help put my mind at ease? Oh, that’s right. It isn’t.

Are these people trying to wind me up? Do I really need to know if I’m positive for Lynch Syndrome? I already suffer from insomnia. I’d never fucking sleep again if I tested positive, and I’m like a goddamned zombie when I don’t get any sleep. Seriously a zombie.

And we all know what would happen next. Some asshole delivery guy would report seeing a zombie at my house, and Fran would have to explain to Homeland Security that his wife was just very worried about getting cancer of the gallbladder ducts. But no one would believe him, because they’d think he’s “unbalanced,” like The Governor on The Walking Dead, who kept his zombie daughter Penny in a closet and only took her out to brush her hair. Then Fran would have to start fielding interviews by himself, because I am not going on TV when I look half-dead, and all the talk show hosts would grow even more suspicious, and Nancy Grace would lose her fucking mind which will just heighten the zombie hysteria. It will all turn tragically ironic when some zombie-apocolypse-doomsday-prepper decides to shoot me in the head when I’m not looking, all because I started worrying about dying from cancer after my genetic testing results came back positive.

Obviously, it would be better for Fran, Nancy Grace and everyone who watches talk shows if I didn’t get tested for Lynch Syndrome. You’re all welcome.

And you might be thinking, well, Karen, if you test negative for Lynch Syndrome, you’ll be able to sleep again! < Cue the wrong answer buzzer: MRRRRRRRP >. I’m sorry … not so, says the genetics counselor … but thanks for playing “Does Karen Ever Get to Stop Worrying About Cancer?” No, if I test negative, I’d need to ask one of my aunts in Scotland who had cancer to be tested for Lynch Syndrome. If she tests positive, we could presume she got cancer from Lynch Syndrome. Then, since I tested negative, I’d be considered in the clear … “relatively speaking.” Not with 100% certainty, mind you, but we could be fairly certain I wouldn’t be at a higher than average risk of getting the same cancer she got. Of course, my aunt could also test negative, in which case we wouldn’t know what caused her cancer, and there would still remain a strong possibility that there’s a different hereditary cancer causing gene mutation in my family that science hasn’t found yet. Are you following this? Yeah … I know. I didn’t find any of it helpful either. How ‘bout someone just call me when there’s a cancer vaccine? Science should really get on that.

And getting back to the worst possible outcome: that I do, in fact, test positive for Lynch Syndrome … I would worry cons.tant.ly. There’s no end to my capacity for worry. Every time I took a piss I’d be worrying about upper urinary tract cancer. I’d be poking my liver daily, and making Fran poke it as well, to see if he thought it felt a bit cancer-ish. Every time I got a mild headache, I’d be sure it was a brain tumor. I’d complain to Fran, and he’d have to keep telling me, “It’s not a tumahh” in a really lame Arnold Schwarzenegger impression, and I’d end up killing him. Sure … maybe I could avoid the death penalty … certainly not by claiming affluenza, but maybe my attorney could make up another disorder like anxiedosis, or maybe we could make anxiety nervosa a thing … but even if I don’t die by lethal injection, my life would still suck, because (a) I love Fran and it would totally suck if I had to kill him, and (b) who would then take care of me while I’m dying of cancer? Nope. Nuh uh. Screw it. I won’t be getting tested afterall.

Fuck me. Now I have a headache. I hope it’s not a tumor.

Shit. It’s probably a tumor. I should never have started thinking about genetics testing.

Thinking about genetics testing just gave me a brain tumor.

Happy fuckin’ New Year to me.

 

About the Author

Karen McBoobView all posts by Karen McBoob

10 Comments

  1. Christopher January 11, 2016 Reply

    On top of everything else I want to know what it is with doctors and names. “Lynch Syndrome” might have been named after someone who had it, which is bad enough, or it might be named after a self-aggrandizing physician named Lynch. This brings to mind the comedian Robert Schimmel being diagnosed with non-Hodgkins lymphoma and his initial reaction was, “Just my luck. I get the one that’s not named after the guy.”
    Now I’m wondering what kind of guy Hodgkins was that he wanted his name spread across two diseases.
    Anyway you turning into a zombie reminds me of a film called “Fido” which wasn’t that great in spite of Billy Connolly being in it but was partly about a woman falling in love with her son’s pet zombie.
    Maybe you’d better check to see if Fran has a zombie fetish.

    • Author
      Karen McBoob January 13, 2016 Reply

      Christopher! You magnificent summanabeech.

      In reading your comment I’m wondering if poor Hodgkins was just terribly wronged. Maybe he had what we now know of as non-Hodgkins Lymphoma and everyone was like, “Oh, we should name this disease after you!” and he was like, “WTF is wrong with you people? Don’t name it after me, you idiots.” So then they said, “Okay sure, we won’t then, we’ll call it NON-Hodgkins Lymphoma … cool?” and his reply was to do a face palm and sigh in exasperation. Then they took his silence as consent, and that’s why it’s called NON Hodgkins Lymphoma.

      I love Billy Connolly. He’s my favorite pale blue person.

  2. Kristine @MumRevised February 24, 2016 Reply

    I love you. That should be enough to stop the cancer worry. Or, maybe, just maybe, you frighten the shit out of me because if you could turn on Fran so fast, what saves me besides the fact that we don’t know where each other lives? Think on that.
    I love your Non-Hodgkins theory and I really hope you are never Lynched.

    • Author
      Karen McBoob February 25, 2016 Reply

      Why thank you Kristine … I love you too. And it’s probably best you don’t know where I live. You’d only get mad at me because when you ring my doorbell, I’ll turn off the lights and hide. Then you’ll be pissed at me, because you know my car is in the garage and you’ll think I’m just trying to avoid you, even though I hide regardless of who rings the doorbell.

      So after having a think on it, it’s much better if we don’t know where each other lives. (That should probably be the first step in any couples counseling … no?)

  3. Emily April 22, 2016 Reply

    Here’s a twist: I am a 47-year-old, 2-year breast cancer survivor, who is the daughter of a 16-year breast cancer survivor, who is Jewish.

    I had the genetic testing done *after* my treatment (lumpectomy and radiation) was complete, because I didn’t want the testing results to sway the treatment decisions I’d already struggled to make.

    Results: negative. Clearly and plainly and without-a-doubt negative.

    Which was a) good reinforcement that I’d made the right treatment choice for myself, and b) a fantastic way to relieve some of my mother’s guilt. It was just shitty bad luck, and not. her. fault.

    • Author
      Karen McBoob April 25, 2016 Reply

      Sorry I missed this comment Emily! So sorry you and your mom got breast cancer. I’m just curious, do you know if you had the latest BRCA (BART) testing?

      • Emily April 25, 2016 Reply

        I had whatever was the latest as of summer 2014. I do not recall the BART acronym being tossed in my direction at the time, but then there’s a *lot* about that time of my life that has fallen out the sieve that now serves as my brain.

        • Author
          Karen McBoob April 25, 2016 Reply

          I’m sure it was the latest then, as BART came out around 2009 or 2010 I think? I hear ya ’bout the brain. I’m going through surgical menopause at the moment, and it might as well be called mentalpause.

  4. Chuck Baudelaire May 20, 2016 Reply

    Where you been, lady? Missing you and your mayhem and support. *hugs*

    • Author
      Karen McBoob May 22, 2016 Reply

      Mostly on twitter @pointlessboob Busy with final round of editing for book. Almost fuckin’ done … woot! I’ll come visit you. 😉

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