Genetic testing and counseling provide power through knowledge

2012-05-02 12:45:59 by Jill Chang - Patient, as posted on the blog.

I am 40 years old and have Lynch syndrome, an inherited condition that increases your risk of colon and other cancers. I am a twice cancer survivor - colon cancer at age 30 and endometrial cancer at 40. And for 40 years I didn’t even know that I had Lynch syndrome.

I grew up knowing that I had a lot of cancer on my mom's side of the family, and always wondered why we had so much cancer, but didn’t know why until recently, when I visited Akron Children’s Hospital’s genetic center.

My mother, Karen, has survived four cancers - colon, breast, endometrial and lung. She is currently fighting lung cancer. All of her cancers were primary cancers. Thankfully, they have been caught at a stage 2 A diagnosis each time. My mother also has Lynch syndrome. My mother’s twin brother died of melanoma (skin cancer) at age 40. And my brother, David, was diagnosed with colon cancer 5 weeks after I had my colon cancer surgery. He has Lynch cancer too.

My maternal grandmother, Ruby, had colorectal cancer three times in her life and also had breast cancer. We assume that she had Lynch syndrome. And the list goes on two generations above my grandmother. Wow, I know that sounds overwhelming. It is.

For a long time we were baffled about why this was happening to our family. I’d always say, "I've got a great family, but sucky genes."Although I would say this, I didn't know what kind of gene contributed to these cancers and if there was a way for us to prevent it from happening.

Then, last March I was sitting in my primary care physician’s office for a routine visit and a poster on the wall caught my eye. I was drawn to it.

I had briefly heard of Lynch syndrome in a few conversations, but honestly didn’t know enough about it. The poster really spoke to me with statistics like:


  • 82% risk of getting colon cancer by the age of 70

  • 60% risk of getting endometrial cancer

  • 15% risk of contracting stomach cancer

  • and so on


This sounded like my family. And I had been having an irregular menstrual cycle in the past 6 months.

I immediately spoke to the nurse practitioner about LS. She took the time to get more information about LS and encouraged me to visit my gynecologist to get checked out and genetic testing. I did and found out that I had stage 2 endometrial cancer.

That poster helped save my life. Since then, I have received surgery and treatment. Thank you, God, I am cancer free!

My brother and sister were also tested at Akron Children’s for LS. My brother has it, but my sister doesn’t.

In a way it’s hard to know that I have this genetic mutated mismatch repair gene, and that I may have inherently passed it along to my children. But what's more important is that I have power through this knowledge. I am now informed and follow annual screenings, procedures and tests to catch any problems early.

It feels good to know what I can do to preserve my life and my family members. I now have a passion to let others know about LS. With awareness will come more survivors! In knowing that, I feel blessed.


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