Knowing Your Family History Might Save Your Life

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Liz Dennis is a stage III rectal cancer survivor. She’s involved with Fight CRC as a Research Advocate in the RATS Program. Liz is also a long-time Call-on Congress attendee who inspired our Scholarship Fund. She has an interest in genetics, early-age onset CRC, ostomy care, and the role of diet and nutrition among colorectal cancer patients.

Colorectal Cancer Family History

My name is Elizabeth Dennis and I am a 10-year survivor of colorectal cancer.  I was diagnosed at age 39, about the same age as my father and paternal grandmother was diagnosed with colon cancer. My father’s brother was diagnosed with the disease at age 51. To say that the paternal side of my family has been affected by colorectal cancer would be an understatement!

From an early age, I learned the importance of screenings and knew about signs and symptoms.  I had my first colonoscopy 10 years prior to my father’s diagnosis and my second five years later. Both were clear.  The week I was scheduled for my third colonoscopy was the week I was diagnosed with colon cancer. Following screening guidelines for individuals at an increased risk for CRC saved my life.

Memories from my childhood became my reality

In grade school, I witnessed my father battle colon cancer. He beat the disease and lived cancer free for 33 years! He had an ostomy and I remember being very curious about it, eventually developing a fear of it.  But there was a lot I didn’t understand about living with an ostomy, and I didn’t ask my father too many questions. That is until I was given the gift of an ostomy (I say that now, that it is a gift because I do feel that way).  

When I woke up from the first surgery after being diagnosed, my first reaction upon waking was to feel my stomach. Sure enough, I had an ostomy and was devastated. I realized why my father wanted to stay at a hotel all those years rather than at my house. Suddenly, I completely understood what he felt, and what he went through, and I was glad I could share that with him before he passed away.

Having someone to connect with about life with an ostomy was extremely powerful, and made me feel more comfortable as I adjusted.

My father was my cancer journey mentor. Someone I could call on if I had questions. This is a benefit of having family members who have had colorectal cancer: they are a fantastic source of helpful information. If you are newly diagnosed and have a family history of CRC, I encourage you to reach out to family members and ask questions. Even if you have had family members diagnosed with other types of cancers they can perhaps answer questions, guide you, and empathize with you.

Knowing my family history saved my life

It is important to know your family history and learn if other family members have had genetic testing. According to my colorectal surgeon, no matter what any genetic test said, with my family history, my children need to start colonoscopies at age 20.  I have to clarify that this is a very conservative approach.

Normal testing for family history starts 10 years prior to the diagnosis of a family member, but with everyone on my dad’s side having had colorectal cancer he wanted to go 20 years prior. My children are 31 and 26 and both have had colonoscopies.

Genetic testing might save your life

My father had genetic testing and found he had hereditary nonpolyposis colorectal cancer (HNPCC) commonly known as Lynch syndrome. I called my uncle to see if he had genetic testing, but since he has no biological children he did not see the benefit of having testing done.

The family assumes no genetic testing was done for my grandmother, who was in remission for 40 years when the colon cancer came back and metastasized to her brain – she passed within 6 months in her 80s.  According to the American Cancer Society, if you have a family history of colorectal polyps or cancer, you have a higher risk of getting colorectal cancer yourself. This risk increases if there is a strong family history of colorectal cancer. Although cancer in first-degree relatives (parents, brothers, and sisters) is most concerning, cancer in more distant relatives can also be significant.

If you make the decision to have genetic testing done, your oncologist should be able to refer you to a genetic counselor. You can also explore the National Society of Genetic Counselors, or watch Fight CRC’s webinars on family history and genetic testing.

Knowledge is power

Ask questions of your doctors and your family members.  The holidays are the perfect time to talk with family – especially those you do not see often. Ask them questions, especially about your grandparents and those of their generation.  Did they know of anyone that had cancer in your family? And if so, what types? For those family members who are very private, try explaining to them why it is so important to know family health history so future generations can take the appropriate actions.

5-10 percent of all colorectal cases are passed down from generation to generation. In my case, three generations have been affected, that we know of. Know your family medical history, and ask the questions now before it is too late!

For more information, check out FightCRC’s Webinars on Genetic Testing: Genetic Testing and YOU and Lynch Syndrome and Hereditary Colorectal Cancer. You can also use the Family health history tool to record your family’s history.