PERSONAL STORIES

As a child, I remember thinking that cancer was a normal progression of life. I expected cancer as I would any other life event.

I hope to spread colon cancer and Lynch syndrome awareness to Native Americans. I feel there is a great need to educate doctors on the Indian reservations to look and listen for signs of heredity cancer in families. I also feel there is a need for genetic counselors on the reservations. Early screening and genetic testing is critical to some families.

Obviously missing a link, Lynch can't read or have respect for age, so be warned you are not Lynch free after 75, keep up the tests, the exams and the prayers.

In 2013 I went in for my "baseline" colonoscopy due to family history for colon cancer. At 47, I found out I had colon cancer. I was lucky enough that my doctor knew about Lynch Syndrome and sent me for genetic testing.

I made a choice to take preventative action and take my health into my own hands. I have chosen to take action, be positive and most importantly be proactive. Don't approach life's challenges by being reactive, be proactive.

Our family had a history with cancer and other chronic illnesses that were considered to many as self induces, but as with many African Americans, racial health disparities cause many Blacks to lack the confidence and focus to support their health concerns.

I was 25 when I first learned what Lynch Syndrome was. My mom was tested because she was battling colon cancer for the second time. She was 56 and far from the stereotypical colon cancer patient. She tested positive for this strange syndrome none of us had heard of.

When I was 10 years old my Dad, Anthony, died of kidney cancer. (The same cancer I had.) My half brother Tony had colon cancer in his 30’s when no one still knew about Lynch Syndrome, it had returned 18 years later. When his cancer returned, his doctor thought he had something called Lynch Syndrome. His doctor tested him and his doctor was right. He did not survive and passed the same day I was getting my radical hysterectomy with BSO. He saved many lives informing the rest of the family. He save my life and my sisters. We are forever grateful.

A few weeks before my birth my father was diagnosed with colon cancer. While my mother was in one hospital delivering me, my father was in a different hospital recovering from colon surgery. That was 1965 when cancer was usually a death sentence.

My mom at at 52 passed away from colon cancer. She had battled this early on but never had genetic testing. The year I turned 52 I was diagnosed with colon cancer. A few day later was tested for Lynch Syndrome.

Colon cancer killed my father at age 54 in 1975. I was 16 years old. In 2019, my then 29 year old daughter was diagnosed with rectal cancer. Genetic testing for both of us was clear: Lynch Syndrome, MSH2.

As I sat in the car on the way to my appointment to get my genetic testing results I told my husband that I was fully prepared to hear that I had the same genetic mutation that my father had.

I knew that colon cancer ran in my family - my maternal grandfather passed away as a result of it when my mom was only 16 years old.

I sit here in a coffee shop, waiting for my 23 year old daughter to finish her 1st annual colonoscopy. While that may seem odd, this is our “normal”.

I found out I had a Lynch Syndrome gene mutation shortly after we discovered that it was the cause of my daughter Jacqueline’s colorectal cancer.

I do not have Lynch Syndrome, but that does not mean I don’t live with the effects of Lynch Syndrome every day.