A Mother's Reflection on Genetic Risk and Choice

If a car had a 50% chance of crashing, I would never let my son in it. With a hereditary cancer syndrome, though, there's no safety feature to lessen the odds. The mutation is simply there, or it isn't. With conditions like Lynch syndrome, every child faces a one-in-two chance. It isn't an abstraction — it's a coin toss with real, lasting consequences.

This piece may make some uncomfortable. I write from my lived experience with Lynch syndrome — shaped by loss, love and daily realities. These are my views alone.

I became a mother not knowing I carried Lynch syndrome. My son was 8 when I was diagnosed. If I had known, I would not have had a biological child. That choice was not available to me.

My perspective on genetic risk isn't theoretical. My mother, Ioanna, died when I was 9. My older brother Jimmy died of colorectal cancer in his mid-30s, leaving behind an infant. My other brother, Nick, survived colorectal cancer and now lives without a colon. He faces biliary tract cancer today. I carry the physical reminders of my own risk-reducing surgeries. Knowing about my Lynch syndrome has allowed me to be vigilant. I believe it has given me precious time with my son. Thankfulness and grief co-exist for me.

Life with Lynch syndrome requires constant vigilance and yearly tests or scans. Preventive surgeries bring lasting impacts. Surveillance takes time, energy, money and access. Not all can afford or obtain this level of care. When discussing informed reproductive choice, we often overlook the reality that many lack resources. This assumption must be questioned.

As parents, we go to extraordinary lengths to protect our children. We vaccinate them, buckle them into car seats, make them wear helmets, slather sunscreen on them before they play outside and enroll them in swim lessons — all to reduce risk, even small risks. Yet the risk of passing on a hereditary cancer syndrome rarely gets the same treatment in the family planning conversation.

After my diagnosis, my biggest fear wasn't developing cancer. It was the thought of leaving my child behind, as my mother and brother had. I also feared I may have already passed something harmful to my son. Once you are a parent, your health shapes your child's sense of security and worldview. With Lynch syndrome, the stakes feel doubled. I worried not only about my own mortality. I worried about handing my son the same inheritance that claimed my brother and now challenges my other brother.

Realities like mine are rarely discussed in family planning. Much focus falls on finishing families before surgeries, not on parents dying young, or the child's lurking question: Did I inherit my father's fate? My brother died without answers. Even with medical vigilance, the disease sometimes wins. Children become adults, bracing for colonoscopies, fearing their inheritance. No counseling prepares you for this — the legacy is an unyielding shadow of loss.

The standard guidance for Lynch syndrome is clear. Consider prophylactic surgeries if you have a uterus and ovaries, depending on your mutation, after having children. These surgeries may reduce cancer risk, but end fertility. What remains unsaid is that the system defaults to biological reproduction before prevention. It's like saying, “Fill the car with passengers before checking if it's safe to drive.”

My adult child will soon undergo genetic testing, and I am living in two possible futures at once. If his result is positive, I will feel anger, sadness and grief — Lynch syndrome means years of appointments, mounting medical bills, anxiety, and uncertainty. If it's negative, we will celebrate. For years, I have felt like Atlas, carrying this weight. A negative result will finally let me set it down. This God-foraken genetic albatross will end with me.

My son is most precious. If I’d known I carried this mutation, I wouldn’t have had a biological child. I lost my mother at 9 my brother at 35 and another sibling fights cancer again. I face the impacts of surgery and now await my son’s test, haunted by that 50% chance since my diagnosis.

Others facing similar odds may choose differently. Perhaps they have less severe family medical histories, value biological connection more, feel optimistic about medical advances, or hold beliefs that shape their decisions. I respect all these perspectives. What matters most, and the heart of my message, is that people should have an informed choice about biological children, fully understanding the risks they may pass on. I did not have that knowledge, and that lack of choice still troubles me. The outcome of my son's test may finally bring me peace.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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