Lynch Syndrome: Why Upper Endoscopies and Colonoscopy Prep Save My Life

If you’re reading this, you probably know the low-level dread that creeps in the night before a colonoscopy — feeling the chill of the prep in your hand, the quiet hope, the unmistakable mix of anxiety and relief that comes once it's all done. I just completed another round of surveillance for Lynch syndrome a couple of weeks ago and had my annual colonoscopy and upper endoscopy. The colonoscopy came back clear, which is always a relief. But the endoscopy found a gastric polyp in my stomach, and thankfully, it was benign.

For those of us with Lynch syndrome, surveillance is not optional; it's lifesaving. While most people think of colonoscopies when they hear Lynch syndrome, upper endoscopies are just as crucial for some of us. Not everyone with Lynch syndrome needs upper endoscopies every year. Whether you do depends on your specific gene mutation and your family medical history. For example, if you have an MLH1 mutation or MSH2 mutation — both of which carry a higher risk for stomach (gastric) cancer — your doctor may recommend adding upper endoscopies to your routine.

If you are not sure what your risks are, or whether upper endoscopies should be part of your surveillance, talk to your doctor or genetic counselor about what is recommended for your situation. Lynch syndrome increases our risk not only for colorectal cancer but also for gastric cancer, among others. Finding a polyp, even a benign one, means the surveillance is working. It means catching things early, before they become cancerous.

I have lost count of how many colonoscopies I have had over the past two decades; nearly 20 by now. I schedule the appointment, pick up the prep, block two days on my calendar and brace myself for the coming scanxiety. It is a cycle of planning, preparing and awaiting. The sameness feels endless, but each step draws a little closer to relief, at least until the same time next year.

Yes, the prep is unlovely, and people frequently complain about it, because the process of drinking it and dealing with the consequences is not fun. Over the years, I have picked up a few tricks that make the prep process a little more bearable. Here is a quick checklist that helps me get through it:

I try to eat less a couple of days before the prep. Your body will thank you.

I make sure I don’t have to do anything, like walk the dog or have anything outside of the house to do after I start the prep.

I chill the prep solution in the fridge. Cold prep is significantly easier to get down.

I use a straw. It bypasses some of my taste buds, helping you power through.

I sip on cold apple juice or herbal tea after each glass to cut the flavor.

I keep a big bottle of water nearby to stay hydrated between doses.

I drink salted chicken broth to stay hydrated and to keep my veins from collapsing. This will make it easier for the nurse to insert the IV. Just a quick reminder: Always double-check your prep instructions, and confirm with your care team which clear liquids are allowed, since different protocols may have different rules. This helps avoid any last-minute confusion or mistakes on prep day.

I distract myself with a good book, my favorite show or a text thread with a friend while I drink the prep. And yes — stay close to the bathroom for the next several hours. Trust me on this one.

These simple steps have made prep day less daunting for me and I hope they help you, too.

But somewhere along the way, I shifted my perspective. Every time I drink it and run to the bathroom for the hundredth time, I remind myself: This is an opportunity that my brother never had. I still remember sitting with him in the hospital, the diagnosis coming too late, when there was nothing left to do but hold his hand and shake my head in disbelief. Thousands of people with undiagnosed Lynch syndrome do not know they need this. So many people in the world do not have access to colonoscopies, cannot afford them and do not have doctors who take their concerns seriously. This is a big problem that devastates families and has generational implications — it makes me so sad.

I get to be proactive and catch things early. I get to potentially save my own life with something as simple as drinking the prep solution. When I look at it that way, the discomfort feels insignificant. It's 24 hours of inconvenience in exchange for years of life. I will take that trade every single time, and I will gladly drink the prep. It sure beats having to deal with colorectal cancer. If you are facing your own scope prep and dreading it, I want to invite you into a small practice that has helped me. The next time you take a sip, finish this sentence: I drink this because...

Fill in the rest with whatever is truest for you: your children, your partner, the future, or simply the gift of another year. That one sentence has a way of transforming something miserable into something that feels a lot like purpose.

The scopes themselves are easy, and honestly, the sedation is the best part, and I have a lovely nap right through both procedures, but it's the waiting that gets me every time. The hours between waking up from anesthesia and receiving the pathology report stretch into something that feels like an eternity. Scanxiety is my constant companion this time of year, but I have learned to remind myself that every anxious hour is proof I still have the chance to catch something early. I may be an N of one in the grand scheme of Lynch syndrome but I believe surveillance is working for me.

For anyone newly diagnosed with Lynch syndrome or considering genetic testing: Please be sure you have met with a certified genetic counselor so that you truly understand your mutation, your risk and please don't skip your screenings. I know they're uncomfortable and inconvenient. I know the prep makes you want to cancel. I know the anxiety is overwhelming. But these scopes save lives. They found colon polyps in me when they were benign. Had I not known I have Lynch syndrome and had not had annual scopes, I probably would not be here now.

Surveillance does not promise certainty, but it shifts the odds in my favor. And when you live with Lynch syndrome, you take every favorable odd you can get. My routine is not complicated, but it is deliberate. Yearly scopes, thoughtful food choices, staying active, and chemo prevention — specifically, taking aspirin to lower cancer risk in Lynch syndrome carriers (based on CAPP2 trial data). However, aspirin is not right for everyone. It can have risks or possible side effects, such as bleeding or stomach irritation, and it may be contraindicated for people with certain medical conditions or on specific medications. If you haven't had that conversation with your doctor or genetic counselor yet, I encourage you to have it, because Lynch mutations vary, as do their screening protocols and prophylactic surgeries. It may or may not be right for you, but it deserves a place in the discussion. I believe the choices I've made have been instrumental in keeping me healthy.

Another year older, another surveillance round complete, another benign gastric polyp found, and I'm grateful for every clean colonoscopy, every early detection, every chance to keep showing up.

It’s worth remembering: The CDC recommends colonoscopy begins at age 45. If you have a family history of colorectal cancer, you may need to start even earlier. For people with Lynch syndrome, colonoscopy screening often starts much sooner, typically in your early-to-mid-20s or 10 years before the youngest case of colon cancer in your family, whichever comes first. That’s because our risk for colorectal cancer is significantly higher, and cancer can develop when we are still young adults. So, even if you feel fine, and even if you’re years away from that first recommended screening age, please talk to your doctor or genetic counselor about the right time to begin screening for you. Please do not wait for symptoms; sometimes they do not manifest until it is too late. Make your appointment soon; it could save your life.

If you have Lynch syndrome or a family history of colorectal or other related cancers, I encourage you to talk openly with your family. Share information about genetic counseling and the importance of screening. Sometimes starting the conversation helps your loved ones recognize their own risks and take action. Taking these steps together can make a big difference, ensuring that everyone in your family has the chance to be proactive and stay healthy.

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

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