How My Lynch Syndrome Diagnosis Will Help Protect My Family

March 21, 2018

Author: Sandie Neitzel

In May of 2017, at the age of 58, I was diagnosed with uterine cancer, and had a radical hysterectomy.  After my surgery, it was recommended that I see a genetic counselor.  I thought it was very strange, but since the staff at the cancer center explained that because myself and my first cousin both had uterine cancer, and that colon cancer runs in our family, I should be tested for something called Lynch syndrome.  I did some research, and discovered that it’s a hereditary disorder caused by a gene mutation that causes affected individuals to have a higher than normal chance of developing colorectal cancer, endometrial cancer, and various other types of cancers.

I was still a bit reluctant to schedule the appointment, but thought it would be best to get some more information.  I was asked to fill out paperwork regarding my family medical history and bring it with me.  I also contacted my cousin who had uterine cancer, and asked her if she had been advised to see a genetic counselor.  Come to find out, she did.  And, not only that, she had been diagnosed with Lynch syndrome!  Now, I started becoming more concerned, and chose to have a simple genetic blood test to determine whether or not I carried the gene mutation which causes Lynch syndrome.

As much as I didn’t like hearing that I tested positive, it made me aware of something very important to my family.  This gene was found to be on my mother’s side of the family, which made a lot of sense since colon cancer runs in her family.

I now know that because I tested positive for Lynch syndrome, my chances for developing colon cancer has increased to 85%.  I will now take better precautions which include getting yearly colonoscopies.

Now that I’m aware that I have Lynch syndrome, it’s also very important to make my family aware of it.  Unfortunately, there’s a 50/50 chance that my siblings and my children will also test positive.  I have made them all aware, and encouraged them see a genetic counselor as soon as possible to find out whether or not they test positive.

Getting uterine cancer was very scary for me, but I feel that it happened for a reason.  If not for that, I would have never known about Lynch syndrome, and how it can affect myself and my family members.

I have learned the hard way that knowing your family medical history and receiving proper genetic testing and counseling are both very important, and could potentially save your life, and the lives of your loved ones!

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