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Playing The Numbers: Life With Lynch Syndrome


I’m 30 years old and I’m on an Aspirin regimen. I have to get a colonoscopy, endometrial biopsy, CA-125 blood test, several ultrasounds and a full skin check pretty much every year.

I have Lynch Syndrome. That means my lifetime risk of colon cancer is over 50 percent. I have a 40-60 percent chance of endometrial cancer. It is 12 times more likely that I will get ovarian cancer compared to a typical woman. My risk of stomach, skin, brain and other cancers is also higher than normal. I’m not a fan of those statistics, and when I first found out I had Lynch Syndrome, the numbers haunted my dreams.

My grandfather was diagnosed with colon cancer at 40 and died in his late 50s. Thanks to a very thorough uncle who pushed for a full panel of genetic tests, we found a genetic abnormality in our family. After my uncle came up positive for a mutation, my mom got tested. Her positive results sent me to a genetic counselor at UT Southwestern.

In early July, I too was diagnosed with Lynch Syndrome; the MSH2 mutation, to be specific.

I’m a pretty anxious person and have done my fair share of self-diagnosing in the past. Throughout my 20s, I was convinced at one time or another that I had latent tuberculosis, rheumatoid arthritis and Raynaud’s Phenomenon. I had none of these things. My doctor suggested I deactivate my internet and get a life. But this past July, I learned I had a real reason to worry. At first it consumed me.

What if I already had cancer? What will they find when they do my baseline screenings? What’s going to happen to me down the road? I had a tough time concentrating, I got migraines, but then, I decided to get busy.

The first thing I did was schedule all my screenings. I felt better just having something on the books. Some of the screenings hurt (I’m looking at you, endometrial biopsy), but not nearly as much as I worried they would. I was warned the colonoscopy prep and procedure would reduce me to tears. In reality, they were a breeze. The skin check was enlightening; the ultrasounds were fascinating and just like that, I had checked them all off my list. So far, so healthy.

The clear test results did a lot to reduce my anxiety, but now I had 11 months to kill before the next round. So I decided to do some research. I consulted a nutritionist about eating “anti-cancer.” I quit drinking Diet Coke and subbed in green tea. I cut down sugars since cancer thrives on the stuff. I pumped up my fruit, veggie, nut and seed intake. I started to feel better and I shed a couple pounds. But more importantly, those monstrous, looming statistics started to fade into the background.

I’ve only known about Lynch Syndrome for a few months and I still grapple with it some days. I will probably have to get my ovaries and uterus removed after I have kids, and that’s tough to swallow. My medical bill pile is starting to tower a bit, and that won’t change anytime soon. But the gut-wrenching worry has passed.

My philosophy is the whole human race is in a submarine. My sub might be speeding and driving a trifle recklessly, but at least I have a periscope. I can see where I’m headed, and I can do a lot to steer clear of obstacles. I may have an increased risk for cancer, but that doesn’t mean I’m going to get it. 

Courtney Collins recently met women like herself who learned their risk for hereditary cancer via these new screenings. She talked to these patients and experts to learn more.

Genetic Cancer Risk: The Basics

  • What is genetic cancer risk? Cancer happens as a result of changes or mutations in genes that control cell growth. Cells with mutations may begin to grow uncontrollably, forming tumors. Some inherited gene mutations make a cancer more likely to develop. If a parent has a genetic mutation, there is a 50 percent chance it will be passed down to their child. For more information, click here.
  • How do I find out if I am at risk? There are several factors to consider. Cancer before the age of 50, several cases of certain cancers within a family, and tumors occurring in the sex not usually affected (like male breast cancer) are all red flags. If this sounds like you, consult a genetic counselor. Most major hospitals have several on staff.
  • How does genetic testing work? Talk to a genetic counselor about whether you are a good candidate. If you are, a blood sample or saliva swab will be submitted to a lab. Depending on your family history, they’ll look for several genetic mutations. If you already know which mutation a primary relative has, they’ll test for that specific genetic change. Click her for genetic testing FAQ’s.
Courtney Collins has been working as a broadcast journalist since graduating from the Medill School of Journalism at Northwestern University in 2004. Before coming to KERA in 2011, Courtney worked as a reporter for NPR member station WAMU in Washington D.C. While there she covered daily news and reported for the station’s weekly news magazine, Metro Connection.