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Hi, I am Kyle Koeppel. I am 28 years old and I have Lynch syndrome. Lynch syndrome is a
genetic mutation that causes a variety of cancers including colon cancer, pancreatic,
ovarian, liver, stomach, uterine, and whole host of others. I found out I have this mutation
when I was 19 years old, after my father spent the majority of my life finding out if there
was a reason for my mother's death after she died of colon cancer at the age of 38. What
it means is that there is a 75% chance that I will develop colon cancer by the age of
65.
Kyle's first experience with loss due to Lynch syndrome happened when she was very young.
Kyle Koeppel: When I was 7 years old, my mother died from colon cancer. It was extremely aggressive
and she died within three months of being diagnosed. Her colon cancer spread to her
brain and elsewhere in her body. My father spent years after her death searching for
answers to make sure that his three children would not die from the same thing my mother
did. He found them. It turns out that my mother had Lynch syndrome as did my aunt, my grandfather,
and my great grandfather. Fortunately, my brothers do not have Lynch syndrome as there
is a 50% chance that each descendent will have it and they do not and I am very happy
about that. It turns out that my great grandfather died of colon cancer at the age of 25. The
reason no one knew about it is that my great grandmother got remarried when my grandfather
was a baby and they did not tell anyone that the man who raised my grandfather was in fact
his biological father. It was not until my grandfather was in his 40s that he learned
that he did not actually exist in the government's records because his mother had remarried and
did not tell him, so there begins the story of my family's Lynch syndrome or as far back
as we know of it. And the years following my mother's death, my father was searching
for answers, trying to figure out how he could prevent my brothers and I from getting colon
cancer. I did not know it, but he had been speaking to a geneticist who happened to live
next door to us and whose daughter went to my school. His name is Dr. Kenneth Offit and
he works in genetics at Sloan-Kettering and is one of the people responsible for finding
Lynch syndrome. He spoke at a high school assembly I attended and told the audience
about all the genetic mutations he was working with. He told us about various families who
had had these syndromes and told us if anyone had a similar family history to speak to him
after the assembly. I was beyond surprised when I approached him and told him my story
to learn that he knew all about me and was waiting for me to turn 18, so that we can
begin genetic testing.
After getting genetic testing done, Kyle's outlook on her future completely changed.
Kyle Koeppel: Learning that I had a genetic mutation changed my life. I only figured,
I would die at 38 like my mother from colon cancer, but learning that I had a genetic
mutation, gave me a plan and it gave me control. I could screen for colon cancer, what are
the most curable cancers if detected early.
Knowledge has given Kyle the ability to stay positive and take an active approach in avoiding
cancer.
Kyle Koeppel: In the face of Lynch syndrome, I stay positive because I know I am doing
everything I can to prevent cancers caused by it. I screened as much as the doctors tell
me to. I stay fit and healthy through diet and exercise and I have wonderful support
of a loving family and a loving group of friends. I know that I will not be like the generations
before me because I have so much information and the best medicine in the world to assist
me through knowing I have the mutation and I feel lucky to know I have it because it
allows me to be proactive and do what I can to have the best medical treatment.
For an interactive tool to learn more about your colon cancer and your personalized treatment
options go to MyColonCancerCoach.org.