How we’re facing familial adenomatous polyposis

When my father-in-law was in his 30s, he was diagnosed with colorectal cancer as a result of familial adenomatous polyposis (FAP), a genetic condition that stimulates the production of polyps and increases a person’s cancer risk. My husband, Jesse, learned that he too had familial adenomatous polyposis when he was 15 years old. By the time I met Jesse in college, he’d already had a colectomy, a procedure that removed his colon. So after we got married, we had a lot of conversations about whether we should have children and risk passing this condition onto them. Jesse and I decided to put our faith in God and not let a genetic condition get in the way of our life. Talking to our children about familial adenomatous polyposis Now, we’re proud parents of an 8-year-old son and a 5-year-old daughter, and we talk openly with them about familial adenomatous polyposis. Starting at about age 3, we showed them anatomy books and explained that their daddy doesn’t have a colon. Slowly and through regular conversation, we explained the potential impact that familial adenomatous polyposis may have on their bodies, too. We relied on reading materials to help us create talking points and answer questions properly. These conversations also helped us prepare our children for Jesse’s Whipple procedure, which he underwent last November after doctors discovered high-grade dysplasia in his duodenum. The Whipple procedure removed Jesse’s duodenum, gall bladder as well as a part of his stomach and pancreas. Coping with fears of passing on familial adenomatous polyposis Yes, my children sometimes get scared about the possibility of having familial adenomatous polyposis,...

Familial adenomatous polyposis monitoring, Whipple procedure gave my husband more time

When he was 15, my husband Jesse underwent a colectomy, a procedure that removed his colon. Jesse opted to do this after learning that he had familial adenomatous polyposis (FAP), a genetic condition that caused him to develop polyps throughout his gastrointestinal tract and put him at increased risk for colorectal cancer. Fifteen years later, a routine endoscopy showed that Jesse had a lot of polyps in his abdominal area. We needed to see a specialist. At a family member’s recommendation, we came to MD Anderson to see Dr. Patrick Lynch. Familial adenomatous polyposis, then a colorectal cancer diagnosis Up until that point, Jesse and I thought his colon removal would prevent him from developing cancer. However, Dr. Lynch explained that Jesse’s continued polyp growth meant he was still at high risk for colorectal cancer. We returned to MD Anderson every six months for a new endoscopy, and over the years, Jesse’s condition worsened. This past summer, the pathology report on a polyp removed from his duodenum showed high-grade dysplasia, meaning the polyp looked more abnormal – and more like cancer. Dr. Lynch immediately sent us to Dr. Matthew Katz, who said Jesse needed to undergo a Whipple procedure, a surgery to remove his gallbladder, duodenum as well as a part of his pancreas and stomach. Jesse’s Whipple procedure Dr. Katz explained that Jesse’s surgery would be riskier than most because his pancreas was healthy, which made it prone to leakage and fluid buildup, increasing his risk for an infection. To avoid any surprises, Dr. Katz prepared for surgery by performing a CT scan to identify scar tissue from...