Down Among the Double Helix

I turned 49 twelve days ago. A few weeks before that, I experienced something new: Talking about my genetics, with professionals.

As friends and regular readers of the blog know, my dad has been dead for a long time. He died in 1997 at the age of 52 from pancreatic cancer. Not a good way to go. Ever since then, I've been doing a sort of mortal arithmetic in my head. Even at his funeral, as I was sitting there watching the American flag being folded and then handed to my father's widow and their 2-year-old son, the thought was being tossed around in my mind of how, 'Okay, I'm 21. Dad was 52 when he died. That means I could have another 31 years left? Maybe?'

At the time, 31 years sounded like a good, long while. I'm here to tell you that it went by quickly. And so, as I continued to near the age where my dad received his diagnosis (he was 51), I began talking with my primary care physician (PCP) about whether or not I should have some kind of genetic testing done, to see if I would be at risk for developing the same type of cancer as my father. It can be hereditary. Pancreatic cancer seemed to run in Jimmy Carter's family, as an example. So, I thought it at least okay to ask. It didn't happen immediately but, finally, during a regular doctor visit in November, my PCP was ready to move ahead with it, and arranged for geneticists to contact me, via Carle Hospital.

A date was set -- December 10th -- and then a week beforehand a survey was e-mailed to me. The geneticists wanted some family history before the meeting. It was quite extensive. I had to list a lot of family members. They wanted to know if each person in the family was alive or dead, and then their current age, or the age they were when they passed away. Additionally (and most importantly), they wanted to know if any family member had had cancer (this would be for any cancer, and if they'd died from it, or if they'd had it and recovered). The geneticists asked for this information for: my parents; grandparents; siblings; aunts; uncles; cousins (they said it was okay if I was a little less exact about cousins, as there could potentially be a lot of them); nieces; and nephews.

I submitted the completed survey and, one week later on December 10th, I had a Zoom meeting with two geneticists. One was a middle-aged woman, and the other was a guy who looked to be in his late-twenties/early thirties. They were nice and seemed to know their stuff. Both geneticists had reviewed the answers I'd put for the survey, and said that it helped them to put together their thoughts on my risk factors. I'm pretty sure I entered the information correctly, though I have a large family (my dad alone had 11 siblings), so there may be some things I didn't get 100% correct. Regardless, they seemed to be satisfied with the information provided.

First, the geneticists noted that cancer doesn't seem to be prevalent in my family, when looking at the totality of my (fairly vast) family tree, coupled with how many of them have had cancer. When directly discussing my dad's terminal cancer, I learned a few things. First, they don't think it's hereditary (for him or for me). That said, the fact that dad had pancreatic cancer does increase my risk for it, by tripling it. They noted that it sounds like a lot, but the risk factor starts at 2%, so a tripling of that would be 6% which, though not insignificant, is fairly low. Second, I learned that the same genetic sequence that allows for pancreatic cancer is also part of the same family as prostrate cancer and breast cancer. I may not be using the exact terminology here, as it's been a month since the appointment, and I'm also not a geneticist. But, you get the idea.

Looking at the totality of my personal and family history, the two geneticists on the Zoom meeting did not think I was at any significant risk of developing pancreatic cancer like my father. They did mention that I could still do the genetic testing, which would entail being sent a vial by mail for me to spit into, then mail it back to them via FedEx, and then they would run the tests. They didn't think it was necessary, but I told them I'd like to do it anyway.

I also asked what would happen if the test results did show I had the genetic coding for pancreatic, prostate and breast cancers? The geneticists responded by saying that annual screenings would be recommended for prostate and breast cancers. I don't know what all is involved with that, and don't really want to know (unless the test results come back that I should have them done). Unfortunately, it sounds like screenings for pancreatic cancer aren't covered by most insurances, and that is because (according to the geneticists) they're not often very useful at detecting it. I know that pancreatic cancer is insidious, and this is apparently another checkmark in that column.

The Zoom meeting lasted about an hour. I thanked the geneticists for their time and information, and then a week or so later the vial I'm supposed to spit in arrived in the mail. And... I haven't done anything with it yet. The holidays were approaching, and I just felt busy and harried, so it sat there untouched. Now that the holidays are over, and we are in the doldrums of January, I find myself hesitating again. The reason why annoys me, and yet it persists.

You see, the thought keeps nagging at me of: Is this something I really want to know? That sounds lame, and it annoys me because this is literally something I've been after for decades, and went to the trouble of talking about it with my PCP, and completing a daunting survey, then spending an hour talking about it with experts. And now I don't know if I want to go through with the testing? What's wrong with me? After all, our genetics can provide the potential for certain things to develop, but they are not necessarily our destiny. It's that last part I'm having trouble with. Intellectually, I know that a positive test result wouldn't predestine me to have these types of cancers, but emotionally all I'm seeing are definitive portents of doom. I should probably get past that.

The rational part of me knows that knowledge can be king, and if it turns out I have the genetic coding that would predispose me to getting any or all of those three kinds of cancers, and it would open the door to annual screenings for at least two of them, then it could potentially save my life. As opposed to just bopping along through life and then one day being caught unawares.

So, yeah, I'll be putting some of saliva into the vial and mailing it off to the lab. Then they can parse through my genetic coding and maybe -- just maybe -- give me a heads up on something. I still need to get over thinking of it as my destiny, though, and that may take awhile.