Hereditary Colon Cancer Takes Guts

Attenuated FAP, Cowden Syndrome, Familial Adenomatous Polyposis, Gardner Syndrome,

Hereditary Mixed Polyposis, Juvenile Polyposis Syndrome, Lynch Syndrome, Muir-Torre Syndrome, MYH-Associated Polyposis, Peutz-Jeghers Syndrome, Turcot Syndrome

Some Things Change...Some Don't

July 26, 2016

As I write this, I am aboard a plane returning home from Baltimore following a meeting with the Food and Drug Administration. Joined by a panel of experts in hereditary colon cancer, including Steve Erdman, MD (Pediatric gastroenterologist; The Ohio State University College of Medicine), Heather Hampel, MS, CGC (Genetic counselor; The Ohio State University Wexner Medical Center), and Susan Peterson, PhD (Behavioral scientist; The University of Texas MD Anderson Cancer Clinic). We discussed w...

Featured Posts

Is it THAT Time of Year, Again?!?

Pity is usually available only in short supply in my family. We’re very much a “Life’s hard…Wear a helmet” group of people. That’s not to say that we don’t care for each other, because we definitely do…we just don’t see any point in sitting on the ground, looking at a skinned elbow, and lamenting the fact that we fell. My mom used to tell me that the only thing crying does is ‘make your eyes red and nose snotty.’ Some call it ‘tough love.’ Some call it ‘the school of hard knocks.”

July 18, 2016

A Critical Look at Sexual Organ Surgeries

March 22, 2016

I wrote this blog as a personal response to the research I conducted while writing our "Patient's Guide to Lynch Syndrome". The views presented below are my own and do not reflect those of our Board of Directors. I do not intend this blog to take the place of, or to present, a medical recommendation. I based the 'dream sequence' on how my response would be if I had the MSH6 form of Lynch syndrome. The cancer risks I use in this blog are drawn from the American College of Obstetricians and Gy...

Kin Folk...

October 1, 2015

Written: September 2, 2015

As I write this post, I am sitting in a cafe on Rua da San Pedro in Santiago de Compostela, Galicia, Spain. I have enjoyed an enchanting month of visiting with friends, eating fresh, flavorful fish and seafood only found near the Spanish coast, and drinking some of the world’s best wine. We leave tomorrow and, for me, today is like the cup of coffee and a toothpick every dinner should end with. Although it took a great deal of effort to get here, I am filled with...

In Awe and Fear of the Scalpel

June 12, 2015

Mom says she saw blood in my diapers as a baby. My father had just had his colectomy eight months before I was born; my grandfather, the de novo FAP carrier in our family, died six years prior. Mom, who only found out about FAP in my dad’s family after I was conceived, was fiercely on the lookout for any signs that I, too, might have FAP. Fifteen years later, I became a third generation previvor.

In my family, whining got you nowhere. “You don’t get a choice. You might as well suck it up...

One Real Wish and One True Fear: In Support of Cancer Prevention Pharmaceutical’s FAP-310 Clinical Trial

Growing up with Familial Adenomatous Polyposis, for me, meant growing up with an intimate knowledge of my own mortality. I never met my paternal grandfather who died at the age of 36, but the legacy of his death was significant. My father grew up thinking he, too, wouldn’t make it past 36 and lived his life accordingly. As such, he, perhaps unwittingly, passed this notion on to me. At 37, I’m living in ‘extra innings.’ To quote Skip Carey, beloved Atlanta Braves announcer, "it’s free basebal...

May 19, 2015

How Do YOU Define YOUR Disease?

May 1, 2015

Since the inception of the Hereditary Colon Cancer Foundation, I frequently find myself having to describe Familial Adenomatous Polyposis. It has, on more than one occasion, given me pause to ask how I define FAP. It's actually a quite interesting thought.

If you do a search online for any of the hereditary colon cancer diseases, including FAP, you are met with cold, clinical information. You'll read about the list of named syndromes - Gardner, Lynch, Turcot, Cowden...

April 14, 2015

"Whenever you grow up in a family of people who think they’re going to die young, childhood ends pretty early. When I was a kid, they would do colonoscopies and not give you anything to put you to sleep like they do today. You were stone cold sober. One time when I was around 13 years old, I was undergoing a colonoscopy and told the doctor to give me the camera. “Dude, if you can see, I want to see.” So there I was…looking in my own camera. That was the stuff I was doing when I was 13 years...

Everyday!

Some Things Change...Some Don't

July 26, 2016

Is it THAT Time of Year, Again?!?

July 18, 2016

A Critical Look at Sexual Organ Surgeries

March 22, 2016

October 1, 2015

In Awe and Fear of the Scalpel

June 12, 2015

One real Wish and One True Fear: In Support of Canccer Prevention Pharmaceutical's FAP-310 Clinical Trial

May 19th, 2015

How Do YOU Define YOUR Disease?

May 1, 2015

April 14,2015

Everyday