Testing 1, 2, 3…

A couple days ago, my dad and I met with a geneticist to discuss our genes and cancer and fun things like that. I know very little about genetics and DNA (and biology, for that matter), so I find it really fascinating to learn about how complex human systems are, and how much new information is being discovered every day.

Seriously, this just looks like a couple horseshoes and some pretty curling ribbon to me. Thank god there are people out there who understand these things.
Seriously, this just looks like a couple horseshoes and some pretty curling ribbon to me. Thank god there are people out there who understand these things.

Experts say that most incidents of breast cancer are not hereditary, and are due to various risk factors (such as radiation exposure, obesity, alcohol intake, etc.). But a portion of breast cancer cases are due to a genetic predisposition. You may have heard of the well-known BRCA1 and BRCA2 genes (as made popular by Ms. Angelina Jolie), which greatly increase the risk of having breast and ovarian cancers. But from meeting with the geneticist, I have learned that there are in fact a whack of other genes that may predispose you to a whole array of cancers.

Hereditary cancers are often suspected if a person was diagnosed at a young age (check), diagnosed with a rare form of cancer for their population (28 year old with breast cancer – check; adult male with breast cancer – check), and if related cancers are present in multiple generations (check). So as you see, there is good reason to wonder if my and/or my father’s cancer was the result of a faulty gene. It could just be completely random, and a huge coincidence, but deep down, I really don’t believe that. I have met so many people who have a very high incidence of cancer within their families, despite being healthy and doing everything “right” to avoid getting cancer. It’s obviously a lot more complicated than we realize.

The geneticist asked us if we would like to undergo testing of 21 genes that have been identified to increase cancer risk. Some of them increase your risk of certain cancers by a great deal, and others more moderately. The types of cancers associated with these genes include breast, ovarian, colon, and a bunch more. When providing me with an example, the geneticist mentioned the gene that increases risk of stomach cancer, and if positive, the possibility of removing the stomach. Um, HOLD IT RIGHT THERE, DOC. There’s obviously no way in hell I would give up my stomach, since doing that would greatly put a damper on my favourite activity: EATING. So let’s hope that bleak illustration does not ever become a reality. I’ll take a pass on that one, thank you.

Genetic testing can be very tricky psychologically, and it’s not for everyone. Some people don’t want to know what terrible things might be lurking around the corner. It can be very unnerving to have that information. But on the flip-side, it can also be reassuring — to know that you didn’t do anything to “cause” your cancer, and to know that there are steps you can take to lower your chances of cancer in the future.

I believe that knowledge is power, and as you might have figured out by now, I am an information-seeker and am constantly looking for answers to all of life’s questions. So for me, it was a no-brainer to partake in the genetic testing, and my dad felt the same as well. We signed some forms and gave some blood and put them in a fancy box, and now we wait (likely for several months) to hear the results. Since this testing currently is not available in Canada, the government needs to be petitioned to cover the cost of the test at a lab in the States. The doctors are handing all of that, but if it does not get approved, I’ll obviously step in and make a scene and make sure it goes through. You don’t want to mess with a feisty cancer blogger, I’ll tell ya that much.

Many of these genes were only recently discovered and not that many people have undergone testing. So we’re kind of like pioneers. Or something.

Obviously it is terrifying to think of any of these genes coming back positive, and what that might mean for me and for my family. But I also can’t help but be curious about what is going on in my own body. I will always be seeking out more answers, wanting to know the good and the bad, and everything in between.

But for right now, all I can do is wait, and hope. And in the meantime, I’m going to enjoy having my health, my life… and my stomach.

 

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8 thoughts on “Testing 1, 2, 3…

  1. I have cancer all over my family tree and I too need to know everything! I had the same testing done as you and your dad two months ago and it came up negative, even for the ‘stomach’ removal cancer!! So happy to share that news with my family and children, although I am sure they will have their own set of cancers to deal with after eating gmo’s and junk food. Fight on!! Kathy

    1. Thanks Kathy! Yah, who knows what causes any of it. It’s all very complicated and confusing. I try my best not to get too caught up in it.. although I’d still like some answers. Hope you’re doing well.

  2. Here is my list of BRCA/HEREDITARY CANCER BOOKS on Amazon. http://tinyurl.com/lglkphz Also, If someone reading this is concerned about their own cancer risk, a genetic counselor is the best first step. Primary care doctors are not trained to give thorough cancer risk assessments. You many go to The National Society of Genetic Counselors to find a genetic counselor near you.
    http://www.nsgc.org -Click on find a genetic counselor, type in city, zip and specialty would be cancer.

    Amy Byer Shainman
    @BRCAresponder
    BRCA/Hereditary Cancer Health Advocate
    BRCA1 positive previvor

  3. There’s a history of cervical cancer in my family (mom and grandmother) and sometimes I wonder if it’s predisposition or just awful luck. I think in your case though you’re doing the right thing by finding out.

    I don’t know whether to recommend this to you or not, but there’s a fascinating book called “The Emperor of All Maladies – A Biography of Cancer.” The history of cancer is obviously brutal and not pleasant, so I’m not sure if it’s something you want to read about because there are a lot of personal experiences of patients in it (with not a lot of happy endings), but the sections on the biology and the evolution of the treatment of cancer are really well done and on a level that someone without a biology background can understand. I totally agree that there’s power in knowledge though, so I figured I’d throw this resource out there if you do become interested one day.

    1. I have had that on my reading list for a long time now! It just always seems kind of daunting but I need to get to it eventually. I know they’re also making it into a documentary, which I’m sure I’ll end up seeing before I ever get to reading the book. I’ve heard amazing things about the book though. And I always appreciate recommendations!

      1. Yeah, it is a *huge* book, but it was surprisingly a fairly quick read (I think I got through it in three or four weeks?). I kind of expected it to be slow a lot, but the pace was really good actually. I’ll keep my eye out for the documentary too!

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