In His Own Words: A Young Patient’s Journey with Familial Adenomatous Polyposis (FAP)

Mike Caprio - Author and FAP Patient Advocate

Mike Caprio with his book "A Bump in the Road."

I’ll never forget my reaction to the news. I was sitting on the couch in my living room. My dad sat beside me, giving a concerned side eye glance. My mom sat across from us, gripping her cup of tea with both hands. A distressed look had taken over her face as she said the words that sent my mind into a whirlwind.

“Sweetie… the results have come back positive on that test we took a few months ago.”

The test my mom was referring to was a genetic one conducted at Mount Sinai in New York City. I was a senior in high school. I knew I was getting a blood test for a disease that ran in our family but my immature adolescent mind was too preoccupied with video games and weekend plans with friends. My mom, aunt, and grandmother all had the condition I was being tested for and they seemed fine. I had never noticed anything out of the ordinary growing up, so I assumed it couldn’t be that serious.

I was wrong.

The disease I was diagnosed with is called Familial Adenomatous Polyposis or FAP for short. It is a rare, inherited condition caused by a gene mutation that leads to hundreds and thousands of polyps developing in the large intestine. With FAP, it is not a matter of if colon cancer will develop, but when. FAP affects only one in five to ten thousand Americans per year and accounts for 0.5 percent of all cases of colorectal cancer. With FAP, patients have to get the entirety of their large intestine removed, which I had done a few weeks after graduating high school. I now live with a J-Pouch. Thankfully, I had my parents, aunt, and grandparents to guide me through the process. Their lived experience made me feel less alone in something that most people – even many doctors – rarely encounter.

At eighteen years old, my diagnosis triggered an existential crisis during what was supposed to be one of the most exciting years of my life. The dread was overwhelming. But today, I can say something that once felt impossible.

I am grateful for my diagnosis.

Had my family not been proactive, obsessively aware of our history and committed to getting tested, I wouldn’t be here today. As painful and frightening as that period in my life was, it gave me a future.

I’m 29 years old now. A full decade has passed since my surgeries. Sometimes I think about the alternate reality where I never got tested. In that version of my life, I would likely be extremely sick or gone entirely right now. The ripple effect of that absence would be felt by more people than I could ever fully comprehend.

You matter more than you realize.

Over the past year I have had a few friends who experienced unusual gastro symptoms that sparked concern. A lifelong friend of mine got screened and they found a polyp, which he was considering blowing off. He told me in a passing conversation and I don’t think he realized that I was going to give him pushback. I sternly warned him of what the consequences of delaying this could be and reminded him of my medical history so that he knew my concern was legitimate. He thankfully listened to my warning and rescheduled the appointment to move it up. The procedure only took an hour to remove it and he was out of commission for about a week. A small incision was made and it was relatively painless. Back to life as normal. Had he delayed it… things could have changed and he would be living a very different reality today.

I’m thankful I was able to have that impact, especially since over the past five years I have seen more posts on my social media feed than I would like to see, of people in my age bracket getting diagnosed with colon cancer and even tragically passing away in some instances. These were all people under the age of 40 who left behind a path of grief and pain in their absence to everyone who loved them. They all had so much more life to live.

The actionable steps you can take this Colorectal Cancer Awareness Month is simple; know your family history. Get screened if you experience any unusual symptoms that concern you! Don’t ignore your gut instinct and listen to your body. Lastly and most importantly, don’t delay treatment or screenings, the time to act is now not later! Like my surgeon used to tell me during any of our meetings before and after my operation, the alternative is much, much worse.

Learn more about Mike Caprio HERE