* UPDATE: I am negative for the BRCA gene.
Breast Cancer Awareness Month means a great deal in our house. It’s not just another reason to re-post something on Social Media and forget about it. Here’s why.
Breast Cancer Awareness Month means a great deal in our house. It’s not just another reason to re-post something on Social Media and forget about it. Here’s why.
My wife, Heather, lost her Mother to cancer. Susan was 41, and Heather was only 13. Heather’s grandmother also had cancer in her lifetime, and if you’ve read Heather’s blog and social media posts, you’ll know about the elective, preventive measures she’s taken to reduce her risk. She has also written two children’s books based off the conversations we’ve had with our own kids. The goal is to help other kids who might be going through the same issues and having the same questions.
I’m so proud of the active stance Heather takes related to matters relating to breast cancer. She gets herself out there and tries to help who she can by sharing her story. She uses social media, blogs, shows up as a guest on podcasts and video interviews. She really walks the talk. So, what can I do to show my support this October? Well, I decided to get tested myself. After all, my paternal grandmother died of cancer, and both my father and his only brother have dealt with prostate cancer themselves. So today, I spit in a test tube and my doctor will ship my DNA off for testing for BRCA1 and BRCA2.
Genetic testing isn’t new to our family. Heather was tested for the BRCA mutation years ago as was her Grandmother while she was still alive. Fast forward to last year, I myself was tested (via 23andMe) in search for explanations regarding my own health. I learned a few things related to my own health, such as a genetic variant in the MTHFR gene which won’t allow my body to process folic acid the same way “normal” people do. But I digress.
This isn’t just a test for how my body metabolizes a B Vitamin. We’re talking about looking for a predisposition to deadly disease. I must admit that I’m a little nervous. However, I’ve always preferred knowing. I’m the guy who would rather people be honest and upfront with me now, even if potentially difficult to accept, to avoid hurt feelings later. I’d rather know, and as the G.I. Joe series told me when I was a kid, “Knowing is half the battle!” Go Joe.
Oddly, the anxiety I have is from what the results means to those around me. My wife has already been through so much. Because she’s positive for the BRCA1 mutation, she already worries about the 50% chance each of our kids carries that same mutation. What happens if I, too, have that mutation? What about any of the other 30 genes that for which Colors tests? I really don’t want her to stress even more, but I also know she’s happy she found out. And of course, we’ve discussed this, so I’m confident she’ll be okay.
What about telling my kids? Yes, I want to know, but do I share my results with our children? They already have some burden knowing that they have increased risk. At 10, 12 and 14 years old, are they ready for the additional weight on their little shoulders of knowing there could be others? We’ve asked about BRCA and whether they would want to know, and when. Two of them want to know. One, the youngest, doesn’t want to know her own results. The good news is that they are all willing to talk about it. At least we’re talking about it.
Then there’s my only sibling; my brother. Obviously he potentially carries any mutation or variant that I carry since it would have been passed from one of our parents, and he also has three kids of his own. The weight of this decision spreads across the branches of the family tree.
Lastly, something my wife hasn’t experienced herself as her parents died many years before genetic testing was available; the guilt my parents could carry from knowing it’s passed from them. Not that they should feel guilty, of course. It’s nobody’s fault. If we worry about passing on “broken” genes we’ll stop populating Earth altogether. Probably not a good choice. However, I already know that it’s difficult to know that my son has the same MTHFR variant as me, and I can’t help but feel some responsibility.
Occasionally this Winston Churchill quote surfaces;
“The truth is incontrovertible. Malice may attack it, ignorance may deride it, but in the end, there it is.”
It means we can’t deny truth, whether we choose to know it or not. Facts don’t discriminate. Sometimes we fool ourselves into thinking ignorance is bliss, but the fact is that ignorance can harm, or even kill us.
Truth empowers us. It allows us to take meaningful action, even if at first it hurts.
Heather and I made the decision to KNOW all those years ago so that she could do everything in her power to live a long life with our kids, something her mom and dad were denied. I’m sure that they would have done exactly what Heather has done; they would have taken every measure available to them to extend their own lives. It goes without saying that Heather wants to be there for every graduation ceremony, wedding, and someday the birth of our grandchildren. So do I. And if I can be given information on how to increase those odds, I’m game.
Another important thing for me, and my advice to anybody making these choices, is to seek genetic counseling. As I read the Color Genomics consent form this morning (I know, who ACTUALLY reads those?), I noted that they offer genetic counseling at no extra cost. This is a huge bonus in my opinion. My doctor provides great counsel in the context of how we can use it to holistically address my health, but I will absolutely contact Color and take advantage of that genetic counseling service. Our BRCA journey started with an amazing team of counselors and physicians from Huntsman Cancer Institute in Salt Lake City, Utah. The team there, over 13 years ago now, set the stage for taking an informed approach to all we do. They helped us navigate considerations that we hadn’t thought about. These thought provoking discussions have helped us better manage our own expectations and those of our loved ones.
So for now I’ll wait for my results and consider these questions with my wife. Until then, I’ll be satisfied that “knowing” is in my future, and for me, knowing is half the battle.
