My Personal Story

By Allen Rush

I found out that I had a Lynch Syndrome gene mutation shortly after we discovered it was the cause of my daughter Jacqueline’s colorectal cancer.  While there was colon cancer in my family—my father passed away from colon cancer at the age of 54 and one of my siblings had surgery for a colon polyp that was a precancerous condition—there was no indication that we met the criterial for Lynch Syndrome testing.

My daughter Jacqueline tragically lost her life because of the perfect storm: we weren’t aware of Lynch Syndrome or its presence in my family’s genes; the medical community’s lack of knowledge about Lynch Syndrome; and the belief that you couldn’t get colorectal cancer at the age of 16.  (Jacqueline had sought medical care for four years with classic colorectal cancer symptoms.). All of these factors prevented our daughter from getting a colonoscopy when her cancer would have been detected early.  Instead, it wasn’t detected until she was 20 and it was Stage 3 cancer.

I am angry and devastated that I couldn’t save Jacqueline’s life as she has saved mine.  Why didn’t it occur to doctors to test Jacqueline for colon cancer when she had been symptomatic?  To say that I was surprised, disappointed, and angry that we hadn’t known more about our family’s history and that doctors were unaware of Lynch Syndrome is an understatement. Together we could have saved Jacqueline’s life.

I started having colonoscopies in my early 40’s because of my father’s diagnosis at age 51. I have had precancerous polyps that would most likely have turned into cancer had they not been removed.  At the time, I was on the “every 5 years” colonoscopy screening plan because of my father’s history.  Had we not found out I have Lynch Syndrome, that screening plan would not have been good enough.  In the general population, it takes approximately 10 years for colon polyps to develop into cancer, but in people who have Lynch Syndrome, polyps develop into cancer in approximately 2-3 years.  Had I stayed on the 5-year plan, cancer most certainly would have developed.  I also get screened for the other cancer risks I have with my specific Lynch Syndrome gene mutation.

My three siblings were tested for Lynch Syndrome.  I am the only one who has inherited the gene mutation.  I don’t look at having Lynch Syndrome as having drawn the short straw in my family because I now have the knowledge to have control over my genetic destiny.  I am extremely fortunate to be a “previvor” and knowing that I have Lynch Syndrome has allowed me to be properly screened for all my cancer risks. Being proactive disallows cancer from silently growing in my body without my knowledge.

It was scary at first finding out I have Lynch Syndrome, but I now know that knowledge is power.  Not knowing you have Lynch Syndrome or fearing the diagnosis WON’T change the fact that you have Lynch Syndrome. Knowing your genetic destiny WILL change the fact that you now have the knowledge and access to cancer screening.  That access can prevent cancer or catch cancer early enough to save your life and the lives of your family members as well.