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Angie's Family Battles a Genetic Predisposition to Colon Cancer — It Struck Her Mother at 42, and Took Her Brother's Life at 28 

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My mother was diagnosed with colon cancer during exploratory surgery. She had been ill for weeks and no one could figure out why. During the surgery, the doctors found a huge tumor in her colon and were able to remove it — with a large section of her colon. She was 42.

I was 22 and angry about this. Her father (my grandfather) had died 10 years earlier from metastatic colon cancer — but he was 82, so that seemed somewhat "explainable." This was not.

She received chemo for a year, and we were scared, but life went on...thankfully. Each CT scan and check-up was nerve-wracking. But somehow, we made it through.

Now fast-forward about six years. I was pregnant with my second son. Mom's cancer came back. Surgery and more chemo, and I spent the better part of my newborn's first month in the hospital, caring for my mom. By this time, I was working for the oncologist, who was doing everything she could to help my mom get well. It was comforting to know that mom was getting the best care.

Then colon cancer really hit us between the eyes. Because I was the oldest of three kids, I was already getting colonoscopies since the age of 22 because of our family history. My sister, Jen, would be next, then our little brother, Dean.

Unfortunately, he didn't get the chance. My baby brother, only 28 at the time, went to his doctor with unrelenting pain in his abdomen and weight loss. It took some time, but we found out over the next month that Dean had metastatic colon cancer. At 28.

"I felt robbed. I did not understand what colon cancer was doing to our family. Or why."

We tried everything. My boss — also Dean's oncologist — tried everything. I vividly remember going to see him in the hospital, very near the end, on September 11, 2001. I was pregnant with my third child and as I stood in front of him, trying to tell him about what the terrorists did to our country (Dean was a former Marine), he reached across and just rubbed my belly. He was saying goodbye to the little niece he would never hold in his arms.

About a month later, Dean passed away. He was 29 years old. He had only been married for 2 years. He never had a chance to have children of his own. I miss him with a desperation I really cannot describe. It is hard to know that my sister and I will never grow old with our brother.

I felt robbed. I did not understand what colon cancer was doing to our family. OR WHY. I gave birth to my daughter only a few days after my brother's funeral. I kept looking at her and her brothers and wondering what was happening.

I spent my maternity leave searching the Internet for an answer. I came across something called Hereditary Non-Polyposis Colon Cancer (HNPCC) or Lynch Syndrome. The more I read, the more it sounded like my family.

Eventually, we had genetic testing. We found that my mother, my sister and I were all carriers of this gene mutation. So what does this all mean?

It means I spend my time encouraging those in the general population to get tested after age 50 or if they have ANY symptoms. It means I have encouraged those in my family to follow close surveillance programs in order to prevent colon cancer and other cancers associated with HNPCC.

It means, most of all, that my brother DID NOT die in vain. He has probably saved my life and my sister's life. He has warned us of the possibility that my four children could possess this gene mutation, and they also need to be cared for and evaluated.

It means life. Life is full of struggles and some sadness. But it is also full of love and happiness and healing. Don’t forget that part.

Learn more at www.ccalliance.org. 

The Colon Cancer Alliance’s mission is to knock colon cancer out of the top three cancer killers. This mission is being accomplished by championing prevention, funding cutting-edge research and providing the highest quality patient support services. Learn more at ccalliance.org.

Published March 3, 2014

See also:

• A Flexible Sigmoidoscopy Saved My Life: Ashley Havlena's Story
• A Fecal Occult Blood Test Saved My Life: Keith Friend's Story
• Never Too Young for Colon Cancer: Michelle Davis' Story