My genetic counselor had the sweetest face— soft, angelic, trusting. After she took my aunt and I into a small room, she smiled, her eyes turned down and then her smile retreated a bit.
“I was really hoping to give you different news today,” she said. I know she meant it. She proceeded to explain what my diagnosis of Lynch Syndrome meant, how it was going to affect my future doctor’s visits, what it would mean for my future family plans and what my risks of cancer were.
It was the day before my 25th birthday. Part of me thought it was a bad idea to schedule this visit then, but I was hopeful, hopeful that the genetic test results would be different.
Almost a year and half prior to that day, I was teaching English in South Korea. I would Skype with my family once a week while I was gone and after about a month into my time there, my mom had something she needed to tell me.
“Sweetie, now I don’t want you to worry, but I went to the doctor and I have uterine cancer,” my mother told me. “But, it’s going to be fine. They caught it early.”
While I was away, my mom had a hysterectomy and under went radiation therapy for her cancer. It was stage one, the best cancer news you can get these days. About seven months later, my mother called me again.
“Sweetie, I had my first colonoscopy and they found a cyst that they are pretty sure is cancerous,” she said this time. “They are going to give me a colectomy and take out the part of my colon that’s affected, but everything is going to be fine.”
Usually it’s a really scary thing to hear your mother say, “Everything is going to be fine” for the second time in less than a year while you’re on the other side of the world, but thankfully, this time it was. Because my mother got uterine and colon cancer so close together, her doctor wanted her to undergo some genetic testing for a hereditary cancer syndrome called Lynch Syndrome, which increases your risks of developing certain kinds of cancers, including colon, uterine, ovarian, stomach, brain and others. It turned out that she did have the condition and her doctor advised her to tell everyone in her bloodline to be tested as well.
So, there I was listening to the results of my test. My aunt, who is my mother’s only sibling, was tested and her results were positive. She lives in New York City where I live, so she came for moral support. My brother was tested a new months prior and his results were negative. The doctor told me that my mother’s children — only my brother and I — had a 50-50 chance of having the genetic mutation. It just so happened that my coin flip was not so lucky.
It kind of didn’t hit me initially. I started to cry, but I had heard how manageable it was that it didn’t freak me out too much. The doctor said I would need to get screenings done more often than other people for colonoscopies and gynecological visits, but that didn’t seem so bad.
It wasn’t until we started talking about my fertility that it hit me. My future children have a 50-50 shot at getting my mutation. When I went to meet with my gastroenterologist for the first time, a feisty, no-beating-around-the-bush, amazing doctor, she advised me to have children earlier than expected—preferably before 35—so that they could remove my lady parts sooner than later. I’ve always wanted to have all the children I’m going to have before 35 anyway, so again it didn’t feel like a big deal. Everything was going to be fine.
I went home and my birthday passed. Over the next year, I had a colonoscopy and had a lot of testing done at the gynecologist’s office. They poked me a few times and took a biopsy, which felt like going into labor for a few seconds. They screened me and did a transvaginal ultrasound, which is not as much fun as conservatives would like you to believe.
A year has gone by and now I’m 26. I’m in graduate school and my life is on track for what I want to accomplish for myself—continuing my education, advancing my career, figuring out what I want in a future relationship. And yet, I am scared, terrified actually. I’m done the research. If I don’t want to pass on my genetic mutation to my children, I would have to go through embryo screenings and then in vitro fertilization, which could cost as much as $30,000 when all is said and done. Considering that’s how much student loan debt I have now with more accumulating from my graduate studies, it just doesn’t look like I’m going to be able to afford that.
So then, do I not do it and risk passing this mutation on to my children? Granted, it’s not Huntington’s Disease or another more deadly genetic condition, but it’s still an increased risk. It’s still a lifetime of screenings, poking and prodding and wondering if I am going to get cancer, if it’s going to hurt or suck having a hysterectomy when I’m only 40, if I’m going to be able to have children at all.
I guess that’s what I’m most afraid of: will I be able to get pregnant when I want to or will it be too hard? Will I regret it if I don’t try to remove the mutation before I have children? Will my partner stick by me if it gets too difficult? Will our relationship be the same after my hysterectomy? I know, I know, I’m 26, why am I worrying about this now? But, I know there are other women out there who think about these things, who have these conditions and are faced with these options, and I know they are just like me: they are fine and they know everything will be fine, but they are also scared. They are still scared.
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