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Hereditary Colorectal Cancer: My AFAP Story

January 25, 2021

Hereditary Colorectal Cancer: My AFAP Story

by Dan Dry Dock Shockley

I am 60 years old, retired from the Navy (a veteran of Operation Desert Storm, Enduring Freedom and Iraqi Freedom) and a 9-year hereditary colon cancer warrior.

In May 2012, at the age of 51, my first colonoscopy revealed 100 polyps throughout my colon, rectum and anus. All of the polyps were guaranteed to develop into colon cancer. Genetic testing then showed that I had a rare inherited mutation in an APC gene, which led to the diagnosis of attenuated familial adenomatous polyposis (AFAP), a subtype of familial adenomatous polyposis. I was otherwise in good health with no symptoms or related family history.

Standard treatment for AFAP is total proctocolectomy with permanent ileostomy surgery to remove the colon, rectum and anus. My genetic counselor and colorectal surgeon encouraged me to read about my condition, the surgery and the lifelong routine surveillance required to address my high risk for cancer in my stomach and small intestine. The surgery was successfully performed in July 2012. It included an ostomy procedure to reroute waste to a new opening in my abdomen.

My military experiences during my 22-year Navy career taught me that mental and physical strength are important attributes, especially when facing personal or professional adversity. Being informed and prepared while maintaining a positive attitude and commitment to the mission is instrumental in achieving success. When faced with professional and physical challenges, I maintain a positive attitude and utilize numerous resources that allow me to better understand the situation. Challenges like my AFAP diagnosis are opportunities, not obstacles.

From the onset, I embraced the diagnosis and initiated research efforts to better prepare myself for life with a hereditary colon cancer syndrome and an ostomy. But resources for people with hereditary cancers are limited. I enrolled in the hereditary colon cancer registries at Creighton University, Johns Hopkins Hospital and the University of Michigan.

Dan Shockley and Dr. Henry T. Lynch

After my surgery, I met Dr. Henry T. Lynch, the founding father of hereditary colon cancer syndrome research who is credited with discovering AFAP. My purpose now is to continue his legacy and to educate the world about hereditary colon cancer syndrome. My vision is to use my journey to inspire and encourage people to overcome adversity while emphasizing the importance of awareness and early detection. I hope that my advocacy efforts will add significantly to the deficit of education about hereditary colon cancer syndrome.

My latest advocacy effort is to have the fourth week of March designated as Hereditary Colon Cancer Awareness Week. My request is being taken up by the Texas Legislature. If approved, it will be the first resolution to bring awareness to this cancer.

I have a metaphor about what life and baseball have in common. Neither has a time limit. If a game goes into extra innings it's considered to be “free” baseball. I like to consider my life as a hereditary colon cancer warrior as one with extra innings, which to me is like free baseball!

My mantra is always to forge ahead with purpose!

Posted in: Stories
Tags: Hereditary Cancer , Colorectal Cancer , AFAP , Hereditary Colon Cancer Syndrome

4 Comments

February 4, 2024

Tom Murphy says:
I have AFAP Have had over 70 Bowel Obstructions in the past 12 years. Would love to talk to someone who has SBO from surgeries with scar tissue

Reply


February 5, 2021

Kevin Myers says:
A VERY awesome story, Dan! I support you in your mission to bring greater awareness to the Hereditary Colorectal community!

Reply


August 7, 2024

Martha Coleman says:
I’ve had colonoscopies since age 35. I’m now 54. I was informed recently after last colonoscopy that I need to have colon & rectum removed. I would like to speak to you about the surgery. I have mixed emotions.

Reply


August 30, 2024

Paige Van Pelt says:
So good to hear from Dan Drydock Shockley again and to know that you are still thriving!

Reply

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