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Living with Lynch Syndrome

Cathy Nobil-Dutton carries the genetic variant for Lynch Syndrome which puts people at risk for a number of different cancers. She was diagnosed with uterine cancer in 2013. Her mother, who also carried this genetic variation, was diagnosed three times with colon cancer.

Her mission is two-fold: to help her clients deal with the challenge of body changes that occur as a result of cancer and to raise awareness about Lynch Syndrome.

March 22nd is Lynch Syndrome Awareness Day.

In March of 2013, I was diagnosed with Endometrial cancer. This came as a complete shock to me. I had not had any symptoms and was faithful about getting my annual gynecological exams. I was very surprised about the TYPE of cancer that I had because I had always thought I would probably have to deal with colon cancer at some point in my life. Endometrial cancer, however, wasn’t on my radar.

Why did I think this? Because my father had colon cancer in his 50’s and survived and my mother also had colon cancer in her 50’s and again in her mid 70’s. When they were both in their 50’s, I honestly attributed it to their unhealthy diet and inactivity. When I was growing up, our family diet consisted of huge amounts of red meat. My mom was an early believer in the Atkins style of eating. She was convinced that carbs made you fat, but each of us were served a whole steak for dinner.

I knew that our lifestyle wasn’t great when I was growing up and with this kind of family history in my back ground, I was very focused on eating foods that would keep my digestive system happy and healthy. I also began getting sigmoidoscopies in my 30’s and colonoscopies in my 40’s. I was diligent about my screenings and my health. I remember a friend saying to me, “you eat more fiber than anyone I’ve ever seen!”. My response was, “I’m just trying to keep everything happy and moving.”

When my mom was diagnosed for the 2nd time, her doctor suggested she pursue genetic testing and she tested positive for Lynch Syndrome. This was about 12 years ago and very few people had ever heard of Lynch.

Her counselor recommended that all of her children be tested. I chose not to be tested for a number of reasons. The most important of those was my concern that I would not be denied health insurance. This was before GINA and the Affordable Care Act. I am self employed and my coverage is through my husband. I knew that at some point, I was going to have to get my own health insurance and I was concerned that I would be denied.

I thought it would be worse to find out I had cancer and not be able to be treated!

Interestingly, my brothers both decided not to be tested as well, each for their own reasons.

So, I kept careful watch on my digestive system and didn’t think about Lynch showing up anywhere else.

In my initial meeting with my oncologist, he immediately asked about my family history and right then a light bulb went on in my head! I had been focusing on only one piece of the picture. Lynch Syndrome, unfortunately has many aspects.

When I think about Lynch Syndrome now, I think primarily about 3 things: education, surveillance and acceptance.

I have continued to be amazed by how few people in the medical community are actually aware of Lynch Syndrome. I have to say that women have done an amazing job of getting the word out about breast cancer but when it comes to “tushies” and parts of our body that are more distasteful, it seems that people are more uncomfortable talking about it.

It isn’t unusual for me to be educating a medical professional about Lynch when they are taking my family history. I recently interacted with a professional who told me she knew what Lynch was and proceeded to ask me which 3 cancers I had because I couldn’t have it if I didn’t have three different kinds of cancer.

So much more is needed in this area- knowledge is power and lives being saved!

I have also had to learn to accept that I will never be free of cancer and the potential for it. In addition to all of my regular screenings for recurrence, I have to spend time each year getting a colonoscopy, endoscopy and other preventive tests. It’s not that the tests are a big deal, it’s just that every year I hold my breath and hope that they don’t find anything.

Living with Lynch Syndrome and understanding how it has affected myself and my family has been a challenge. Understanding how the gene mutation expresses itself and educating others about prevention and screening will hopefully create more “previvers” rather than “survivors.

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