Gimme Shelter from Lynch Syndrome


On a recent car ride with my son, I asked him if he planned on being tested for Lynch syndrome, the cancer-related syndrome that I have.

Mick Jagger's high falsetto vocal plays on my car speakers as I drive my son down back to school after Christmas break.

"Ooh, a storm is threatening

My very life today

If I don't get some shelter

Ooh yeah I'm gonna fade away. . ."

As Jagger sings about war, tension and political unrest in “Gimme Shelter,” I cannot help but think of the storm in the song as a metaphor for Lynch syndrome. Lynch syndrome, the most common hereditary cancer syndrome, threatens many lives daily, causing emotional turmoil, and making one feel like the world is closing in on you. It can sometimes feel apocalyptic, especially if you have lost a parent, sibling, or child to a Lynch syndrome-related cancer.

Lynch syndrome is not rare — 1 in 280 people have it in the United States, according to the American Cancer Society, and sadly, many of those with it don’t know it.

Lynch syndrome is autosomal dominant, meaning a child who has a parent with the mutated gene has a 50% chance of inheriting that mutated gene. I inherited it from my father; now, I cannot help but be worried if my son has it. Genetically testing minor children for most hereditary cancers is generally not recommended. However, my son is no longer a minor; he's 20.

My brother Jimmy developed colorectal cancer around his mid-30s and died at 36. My genetic counselor told me that my son should be tested and undergo screening if he is positive for Lynch syndrome around age 25 —10 years before the earliest case of Lynch syndrome-related cancer in my family history.

My son's left knee bounces to the beat of the music. The worst part of having Lynch syndrome is knowing I may have unknowingly passed this on to him. I turn to him halfway through the song and ask him in a positive tone: "Are you interested in undergoing genetic testing for Lynch anytime soon? " He smiles at me and does not miss a beat with his knee.

"Yeah, sure, but probably when I graduate college in a couple of years. Let me enjoy my life! Besides, I read your Twitter feed, Mom. There are so many positive medical advances out there for those with Lynch. Things are not the same as when you were diagnosed — you know very well that it is not a death sentence. Besides, if I do have it and I get sick, I have YOU to advocate for me. I will be just fine. Don't worry, Mom."Nicholas smiles at me and continues enjoying the song.

He's right. There is much to be optimistic about right now for those with Lynch. Many medical discoveries and advances have been made within the past decade. Aspirin is used as a chemoprevention, immunotherapy may put various Lynch syndrome-related cancer in remission, and AI is improving screening measures, specifically for colonoscopies. What excites me the most is the Lynch vaccine in clinical trials now. The Lynch landscape has changed since my diagnosis 12 years ago.

Having Nicholas tested for Lynch syndrome will be a double-edged sword for me. On the one hand, I will feel some relief because we will know his status. If he tests positive, I will probably feel guilt, anxiety and concern; if he's negative, I will rejoice, knowing this dreadful mutation ends with me.

Then, over the speaker, Merry Clayton chimes in: "It's just a shot away."Until that shot, we have some time.

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