“Why did you get cancer?” the six-year old asks me.
I am two glasses into my sake cocktail at a Japanese restaurant where I’m meeting several distant relatives for the first time. I say the most comforting thing I can think of of all my theories that I had been mulling over obsessively for going on five years.
“My dad’s side of the family had it. His mom had breast cancer. It was genetic.” That is not a statement of fact, but it is one of the three potential theories I settled down on after obsessively going over everything I’ve ever ate, breathed, drank and been exposed to (like cell phones, plastic, deodorant and the second-hand smoke of the guy I casually dated when I was 22). Door number 2 – that this was sporadic bad luck – would provide little comfort considering the parents of the little girl are my age. If sporadic cancer can happen to me, it could happen to her young parents too. Door number 3 is “I inherited from relatives you’re related to.” Door number 4 is “I don’t fucking know.” It’s the most honest but considering adults have issues with ambiguity, could we really expect a kid to get it? And I’m still trying to figure out exactly what my degrees of separation are to these lovely people.
We are at a weird intersection where we have the means to find lots of stuff out but we’re not sure what to do with the information. There are plenty of good things about ancestry testing kits, like the potential to find long-lost family and serial killers that terrorized communities. But the tests are far from 100% consistent and accurate. Which can lead to identity crises and wondering if your sainted grandmother actually cheated on Grandpa and had another man’s child.
Now, hereditary cancer tests. I’m all for testing for BRCA because there’s actually things that could be done to reduce risk like a preventative masectomy or oopherectomy. It might cause women to feel pressure to have kids earlier but I tell you, if I had known cancer was in my near future, I would married Younes and tried to have kids a lot faster, “minimum time of dating” standards be dammned. Also the risk of male breast cancer, prostate cancer and Pancreatic cancer isn’t really addressed but at least those at risk know which signs to look for.
So in Spring 2016, I had large-panel genetic testing that tested for, like 79 mutations. I was negative for 77. I tested Variant of Unknown Significance for two. One mutation was also linked to colon cancer, which a great-grandmother died from. This knowledge has also caused me distress in situations such as when my aunt developed precancerous polyps and a college classmate died of colon cancer at the young age of 31.
And then, less than two years after I had that test done, the newspapers announced that 72 other potential inherited cancer mutations had been discovered. I still have not recontacted my genetic counselor because it’s beginning to feel like whack-a-mole. One question gets answered and another pops up.
And that doesn’t even get into the testing on non-inherited mutations, ie mutations that exist in the tumor(s) themselves.
Eventually, I probably will pursue further testing because ultimately I’d rather have the information and not know what to do with me than not have the information at all. And I am really grateful for reconnecting with my mom’s dad’ side of the family. But I do caution those who are looking to do at-home genetic testing, whether is ancestry . Com or Color Genomics – understand what you are getting into. Educate yourself or in some cases, see a genetic counselor. Knowledge causes consequences. It can be good, it can be back, but there are consequences.