My niece and nephew are gorgeous. Their curls, their eyes, their laughs are all stunning, overwhelming, and enchanting. I love being with them. I love how much my niece, who’s 7, loves me.
“Okay, so you’re sleeping over tonight, right?” she asks. But it’s not really a question.
“I can’t tonight, sweetie. I have to go back to the city.”
“No, but you can sleep over though. You don’t have to go back to the city tonight. You can go tomorrow.” She’s a future lawyer in the making.
While it breaks my heart to leave her, I’m glad my niece is my niece and not my daughter. I’m 27 and not ready to put someone before myself just yet. And while I still have time to have children, my time is quickly running out.
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For women like me with genetic conditions or hereditary cancer syndromes that affect our reproductive systems, the plan to have children is centered not just around running out of time to successfully conceive, but also on needing to surgically remove reproductive organs in order to significantly reduce the risk of cancer. The decision to have children, which involves consideration of the chance of passing on the mutation, needs to be made sooner rather than later.
At the age of 25, I was diagnosed with the hereditary cancer syndrome known as Lynch syndrome. This condition means I have an increased risk of developing many types of cancers, including several to my reproductive system such as uterine, ovarian, and endometrial. Other hereditary cancer syndromes include hereditary breast and ovarian cancer syndrome, which is the BRCA1 and BRCA2 gene mutations known more commonly as the “breast cancer genes,” and Li-Fraumeni syndrome, among many others.
According to Lynch Syndrome International, up to one million people are projected to have Lynch syndrome in the United States alone, but only 5 percent are currently diagnosed. According to the National Cancer Institute, between one in 400 and one in 800 people in the general population in the United States have a BRCA1 or BRCA2 mutation. Overall, approximately 5 to 10 percent of cancers arise due to inherited mutations in genes responsible for hereditary cancer syndromes.
After my diagnosis, I met with several doctors who talked to me about what preventive measures I needed to take in order to lower, if not eliminate, my risk of developing cancer.
“Have the kids you want to have by the time you’re 35 and then around 40, we’ll take everything out. It’ll be okay.” When my gastroenterologist said “everything,” she meant a prophylactic hysterectomy and bilateral salpingo-oophorectomy, which involves removing the uterus, fallopian tubes, and ovaries.
This didn’t seem like a scary situation. I was in a committed relationship at the time of my diagnosis and still had 15 years before I had to have the surgery. No problem.
Fast-forward two and half years, and I am no longer in that committed relationship and not seriously involved with anyone at the moment. I just finished graduate school and I am trying to figure out what I want for myself let alone what I want in a relationship, so the idea of being responsible for another human life in the next five to seven years seems terrifying.
I’m not the only person in my situation that feels this way. Caitlin Brodnick, Upright Citizens Brigade Theatre performer, also found out about her genetic condition, BRCA1, at the age of 25. At 28, she had a double mastectomy and shortly after had reconstructive surgery. Because of her mutation, Brodnick is also at risk for ovarian cancer, which according to the American Cancer Society, still does not have any reliable screening tests and only about 20 percent of cases are found at an early stage. When Brodnick talked to doctors about this risk, she said they told her, “Oh, at 40, you’ll have your ovaries out—no questions asked.”
“Lovingly, friends will say to you, ‘Oh, you have so much time. Women are having children into their 40s,’ which is true,” she said. “But if you are at risk like we are, you’re getting these other responses from doctors. There’s so much in your control, but at the end of day, you don’t have any control.”
Brodnick has never had a problem talking about her mastectomy and even documented her experience with Condé Nast Entertainment and Glamour.com in a series called, “Screw You Cancer.” But when it comes to talking about having children and having her ovaries removed, Brodnick said it causes her a lot of stress.
“I’m having a really hard time with it,” she said. “I don’t want to have kids because I’m afraid of dying. That’s not the way to have kids. But then I nanny for a lot of people, and I’ll be with my friends and their kids, and I want to have that too.”
For all women, having children later is not always an easy choice. According to a 2014 report from the Centers for Disease Control and Prevention (CDC), the average age of a woman having her first birth has risen during the past four decades. Since 2000, “46 states and DC had an increase in the first birth rate for women aged 35–39,” the report found.
More and more women want to be financially secure and emotionally ready to have a child. For many, that is happening after they are 35. And for those who are ready before then, it may take a while to even conceive a child. About 6 percent of married women 15-to-44 years of age in the United States are unable to get pregnant after one year of unprotected sex, according to the CDC. Additionally, about 12 percent of women in the same age group have difficulty getting pregnant or carrying a pregnancy to term, regardless of marital status. So while a woman may decide at 30 she wants a child, it could take a year or longer before she is able to give birth.
Rebecca Nelson is 34 with Lynch syndrome and had been trying to get pregnant with a donor for a year before reconnecting with someone from her past whom she is now in a relationship with. She said they have been trying to get pregnant since January and are now working with a fertility doctor.
“My gynecologist has been after my uterus for years since she found out that I have Lynch,” she said. “But I want at least one or two children before I have my hysterectomy.”
Michelle Anthony, a 30-year-old woman who is in the process of being tested for Lynch syndrome, lost her 53-year-old father to colon cancer, has an aunt who had colon cancer in her early 40s, an uncle who was diagnosed with prostate cancer at 59, and a 31-year-old sister with endometrial cancer. Anthony and her husband currently have three children and would like to have another child. They have decided to keep trying while they wait for the genetic testing results. She said if the results come back positive for the mutation before she gets pregnant, she would have the hysterectomy.
“If I can get pregnant before then, I mean, what else am I going to do with my uterus?” she said.
Although Anthony doesn’t yet know whether she has a hereditary cancer syndrome, those who do have such conditions have a 50/50 chance of passing their mutation to each of their children. Many women have different feelings about this choice, and while some do not consider hereditary cancer syndromes as severe as mutations such as Huntington’s disease for which there is no cure, it is still a lifetime of increased risk of developing cancer.
For myself, I keep going back and forth about this choice. On the one hand, Lynch syndrome is a completely manageable condition. On the other, I think about whether I would want my daughter, if I were to have one, to have to make the same hard choices—about pregnancy, cancer prevention, surgery, relationships, and timelines—I’ll have to make in the future.
“As far as whether or not you should have children, and I had to think about this [because of the 50 percent risk], and this may sound kind of heartless, but everybody dies,” Anthony said. “It doesn’t matter who you are, and that goes for my children who are playing in the other room right now whether they have Lynch syndrome or not. So all I can do is teach them to appreciate the life that they have.”
Sharon J. Perlman, president and co-founder of CCARE Lynch Syndrome, expressed similar feelings. Perlman has Lynch syndrome, as does one of her two children.
“I talked to one person who said, ‘Had I known I had Lynch syndrome, I would have never had a child,’ and I was very, very sad to hear this,” Perlman said. “It’s devastating to know that I have passed this on to at least one child; however, I also passed along many other wonderful traits.”
Perlman also pointed out that the world of Lynch syndrome and other hereditary cancer syndromes has exploded with research and awareness. She said she is convinced we will discover more to address the consequences of these conditions.
Susan McDevitt, who also has Lynch and is the executive director of Lynch Syndrome International, one of the organizations working on this research and awareness, said she is also hopeful for the future of this field of women’s health. She believes there is no right answer when it comes to the question of whether or not to have children and how to have them if someone does have one of these conditions.
“I look at my children and I wouldn’t change a minute of anything. I wouldn’t change having them, Lynch or not,” she said. “As far as if any of my children have it, okay, you deal with it. It’s like going into battle and you’re armed.”