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| Facing my fear: did I have the cancer mutation that killed my dad? | |
| (35 minutes later) | |
| I’ve known for years that my paternal grandmother died of colon cancer in her early 40s. But I didn’t think it had too much to do with me, beyond being a very sad fact in our family history and inspiring a lot of intense – and embarrassing – conversations about how much fiber we were eating. | I’ve known for years that my paternal grandmother died of colon cancer in her early 40s. But I didn’t think it had too much to do with me, beyond being a very sad fact in our family history and inspiring a lot of intense – and embarrassing – conversations about how much fiber we were eating. |
| It wasn’t until nearly 50 years after her death that my family learned that the cause of my grandmother’s cancer was Lynch syndrome, a genetic condition that carries not just a high risk of colon cancer, but endometrial cancer, ovarian cancer and skin cancer. Others, as well. | It wasn’t until nearly 50 years after her death that my family learned that the cause of my grandmother’s cancer was Lynch syndrome, a genetic condition that carries not just a high risk of colon cancer, but endometrial cancer, ovarian cancer and skin cancer. Others, as well. |
| We learned about my grandmother’s Lynch syndrome when my father was diagnosed with it six years ago: he had a skin cancer that was typical of Lynch. He had other risk factors, too: he fit the Amsterdam Criteria, which were developed by doctors in 1990 to help to identify families with Lynch. My grandmother died four years before the syndrome was identified at all. | We learned about my grandmother’s Lynch syndrome when my father was diagnosed with it six years ago: he had a skin cancer that was typical of Lynch. He had other risk factors, too: he fit the Amsterdam Criteria, which were developed by doctors in 1990 to help to identify families with Lynch. My grandmother died four years before the syndrome was identified at all. |
| When my dad called me on Skype to tell me the news, he was in Baltimore, and I was living in London. “You should get tested for this,” he said. I said OK, but I didn’t do it. I was afraid. | When my dad called me on Skype to tell me the news, he was in Baltimore, and I was living in London. “You should get tested for this,” he said. I said OK, but I didn’t do it. I was afraid. |
| My two siblings, an older brother and a younger sister, quickly took the test. With Lynch syndrome you have a 50% chance of carrying the gene if one of your parents does. Neither of my siblings had it. When I think about the many reasons that I didn’t get tested, I have to admit that among them was the fact that I didn’t believe that our family could be so lucky that all three of us had escaped, even though I believe in science over luck. | My two siblings, an older brother and a younger sister, quickly took the test. With Lynch syndrome you have a 50% chance of carrying the gene if one of your parents does. Neither of my siblings had it. When I think about the many reasons that I didn’t get tested, I have to admit that among them was the fact that I didn’t believe that our family could be so lucky that all three of us had escaped, even though I believe in science over luck. |
| I blamed administrative issues when my family asked me why I hadn’t had the test. Lynch is rare enough that I assumed it wouldn’t be straightforward to arrange for the testing on Britain’s National Health Service (that said, I never tried). Pre-Obamacare, there was a possibility that testing positive would affect my ability to get health insurance when I moved back to the US. Post-Obamacare, I moved to Berlin, where I had one unsuccessful phone call with a genetics institute – I didn’t know how to say ‘colon cancer’ auf Deutsch. Too difficult, I concluded. | I blamed administrative issues when my family asked me why I hadn’t had the test. Lynch is rare enough that I assumed it wouldn’t be straightforward to arrange for the testing on Britain’s National Health Service (that said, I never tried). Pre-Obamacare, there was a possibility that testing positive would affect my ability to get health insurance when I moved back to the US. Post-Obamacare, I moved to Berlin, where I had one unsuccessful phone call with a genetics institute – I didn’t know how to say ‘colon cancer’ auf Deutsch. Too difficult, I concluded. |
| I was scared I’d have to tell my father that I carried the same gene that had caused the cancer that was killing him | I was scared I’d have to tell my father that I carried the same gene that had caused the cancer that was killing him |
| Another reason that I didn’t get the test – a simple blood draw – is that I was single. Prophylactic hysterectomy is the recommended treatment for women with Lynch syndrome because of the high risk of gynecological cancers. They’re hard to catch early and difficult to treat. Being unpartnered in my early thirties hadn’t troubled me too much: I was happy to wait for the right person. But now on first dates I’d look across the rim of my pinot grigio at some man who was mostly a stranger and wonder, “Am I going to have to tell you about the likelihood of my early surgical menopause?” | Another reason that I didn’t get the test – a simple blood draw – is that I was single. Prophylactic hysterectomy is the recommended treatment for women with Lynch syndrome because of the high risk of gynecological cancers. They’re hard to catch early and difficult to treat. Being unpartnered in my early thirties hadn’t troubled me too much: I was happy to wait for the right person. But now on first dates I’d look across the rim of my pinot grigio at some man who was mostly a stranger and wonder, “Am I going to have to tell you about the likelihood of my early surgical menopause?” |
| In the spring of 2012, my father, who never smoked a thing, was diagnosed with advanced lung cancer. The tumor carried the markers of Lynch syndrome — unusual, but not unheard of. On one of my last visits home, we went to Staples together. By then it was painful for him to walk, and he looked lost in the folds of a coat he’d worn every winter for a decade. | In the spring of 2012, my father, who never smoked a thing, was diagnosed with advanced lung cancer. The tumor carried the markers of Lynch syndrome — unusual, but not unheard of. On one of my last visits home, we went to Staples together. By then it was painful for him to walk, and he looked lost in the folds of a coat he’d worn every winter for a decade. |
| Before getting out of the car we sat for a moment. “You should get tested,” he said, and I stared hard through the windscreen at the big grey parking lot and said: “Yes, Dad, I know.” But I didn’t intend to do it as long as he was alive. I was scared I’d have to tell my father that I carried the same gene that had caused the cancer that was killing him. | Before getting out of the car we sat for a moment. “You should get tested,” he said, and I stared hard through the windscreen at the big grey parking lot and said: “Yes, Dad, I know.” But I didn’t intend to do it as long as he was alive. I was scared I’d have to tell my father that I carried the same gene that had caused the cancer that was killing him. |
| After he died at the beginning of 2014, six weeks after I moved back to the US to be near him and my mother, it felt like the biggest reason I had been avoiding the test was gone. Losing my dad was the worst thing that had ever happened to me, and I’d survived. Getting tested, I decided, could not be worse. Lynch syndrome is bad, but it doesn’t have to be fatal: my mother pointed out that my great-grandmother had it and died in her mid-eighties from something else altogether. And getting tested was what my dad wanted me to do. I gave up a vial of blood and went on vacation while I waited to hear; I felt a kind of relief that I’d finally taken responsibility for my health. | After he died at the beginning of 2014, six weeks after I moved back to the US to be near him and my mother, it felt like the biggest reason I had been avoiding the test was gone. Losing my dad was the worst thing that had ever happened to me, and I’d survived. Getting tested, I decided, could not be worse. Lynch syndrome is bad, but it doesn’t have to be fatal: my mother pointed out that my great-grandmother had it and died in her mid-eighties from something else altogether. And getting tested was what my dad wanted me to do. I gave up a vial of blood and went on vacation while I waited to hear; I felt a kind of relief that I’d finally taken responsibility for my health. |
| This was followed by a feeling of crippling regret. After I got the news, I felt for a time an intense and bleak terror about my future that was far worse than the fear I’d had of taking the test. | This was followed by a feeling of crippling regret. After I got the news, I felt for a time an intense and bleak terror about my future that was far worse than the fear I’d had of taking the test. |
| But in time, I started to feel better. I’d lived with the gene since the day I was born. Now I knew that if I took precautions, my life expectancy would be normal. I’m fortunate to have access to doctors who are enthusiastic about the project of monitoring my health: nothing is perfect, but there are many tests I can take to help identify cancer in its earliest stages. | But in time, I started to feel better. I’d lived with the gene since the day I was born. Now I knew that if I took precautions, my life expectancy would be normal. I’m fortunate to have access to doctors who are enthusiastic about the project of monitoring my health: nothing is perfect, but there are many tests I can take to help identify cancer in its earliest stages. |
| Surgery is in my future, but several years away. I can’t tell anyone else who is facing the decision to be tested for susceptibility to a disease what the right choice is for them. I can only say that I’m glad that I did it. | Surgery is in my future, but several years away. I can’t tell anyone else who is facing the decision to be tested for susceptibility to a disease what the right choice is for them. I can only say that I’m glad that I did it. |