Denise
At the age of 47, I was diagnosed with FAP (familial adenomatous polyposis ) colorectal cancer. FAP is a genetic disease – my eldest daughter, Victoria, inherited the gene. In May of 2020, I will be 8 years cancer-free.
I started writing short essays 5 years after being diagnosed. As an English major, I rarely used my knowledge other than to proofread my daughters’ school papers and am thankful to The Philadelphia Inquirer for giving me an outlet to write about my ongoing journey. My goal is to bring this rare, genetic cancer into ordinary conversations, connecting with readers struggling with genetic diseases.
I do have a life outside FAP! I’m passionate about my family, flower/veggie gardens, animals, volunteering, and exercise. Recently, I picked up pickleball and am addicted!
Victoria
I discovered my inherited FAP gene mutation when I was just 17 years old, in my senior year of high school. I started on a regimen of daily Celebrex – shown to reduce the occurrence of polyps in the colon – and annual colonoscopies/endoscopies. June 20, 2019, I had my entire colon removed as preventative measure against developing colorectal cancer like my mother. I had my surgery at the Hospital of the University of Pennsylvania by the same surgeon as my mother and recovered at home with with my family and friends.
I graduated from Stetson University in DeLand, FL in 2016 and immediately started working for Aramark Uniform Services – Orlando as an Installation Manager. Like my mother, I am committed to exercise and a healthy lifestyle. Admittedly, I have a slight addiction to clothes, shoes, and quality purses!
Telling Our Story
October 24, 2011. A warm, sunny autumn day filled with infinite possibilities. A bike ride, a walk in the woods with my dog, Charlie. Instead, at a regular checkup, I was told I had FAP Colorectal Cancer (Familial Adenomatous Polyposis). That night, I sat in the living room, just staring out the window, Charlie never leaving my side. Eventually I slept. The sun rose and for a moment I thought, “What a horrible nightmare.” During the brief sliver between moonlight and daylight, when all was quiet, I thought I was ok. It wasn’t until I told my daughters and mother that the truth became crystal clear and unavoidable. There were oceans of tears but I didn’t cry and that helped settle everyone. I knew this diagnosis was a life changer. This detour would give the girls a new sense of self and an independence that can only come from within, when faced with an unwanted challenge that they have to face, not skirt around.
It wasn’t the diagnosis of FAP Colorectal Cancer that was life changing. Although it was. It wasn’t the fact that at 47, I was 17 years beyond the oldest patient diagnosed with this cancer. Although it was. The unavoidable shift that forever changed my life was the fact that the cancer was genetic and aggressive and there was a greater than 50% chance that the gene had been passed onto each of my three daughters. Genetic testing revealed my eldest daughter, Victoria, had the gene. She would definitely develop FAP Colorectal Cancer. A colonoscopy revealed as many polyps at her tender age of 17 as I had at 47. Her twin sisters, Olivia and Julia (14 at the time) were clean, no FAP, ever. Victoria was relieved that her sisters were safe. She said she knew it would be her, that it would have been too cruel a fate for both to inherit the gene, or worse, one twin to be clean, the other not. She was the sensible choice. As if cancer cares who it chooses.
I started on a whirlwind course of chemo right after Thanksgiving, completing 6 rounds by the end of January 2012. Daily chemo and radiation took place beginning February 1 and ended in mid-March. A 6-week resting period came next, leading up to the surgery that would remove my colon. Of course, my surgery needed to be done in May and was scheduled 2 weeks before Victoria’s senior prom. I wasn’t happy but there was nothing I could do about the timing of the surgery. Surgery was a success and I was discharged a week before prom. I was able to be there for pictures with friends before coming home to crash!
This May, I’ll be 8 years cancer-free! I did develop some inoperable desmoid tumors (a somewhat common syndrome with FAP survivors) in my mesentery along with fistulas (unnatural connections made between organs) and have been on oral chemo for 2.5 years in an effort to shrink the tumors. If the major tumor would shrink significantly, there would be a small possibility of correcting the fistulas, which would make me very, very happy! I’m still optimistic that I will be tumor- and fistula-free in the not so distant future 🙂
Victoria had her colon removed June 19, 2019 at the age of 25. What a success story! She spent the year before surgery getting into her best physical shape and was prepared – mentally and physically – for major surgery. She was discharged just 3 days after surgery! And the crazy girl was eating Mexican food and drinking Margheritas just 10 days later at her best friend’s moving to Los Angeles party!
Mom & Me & F.A.P. 