Gastroenterology

Your Complete Guide to Familial Adenomatous Polyposis (FAP)

At a Glance

Familial Adenomatous Polyposis (FAP) is an inherited genetic condition that causes numerous colon polyps and a high risk of colon cancer. Proactive management with genetic testing, customized surgeries, and lifelong medical screening is highly effective at preventing cancer and extending life.

Receiving a diagnosis of Familial Adenomatous Polyposis (FAP)—or finding out you carry the gene—is life-altering. It is completely normal to feel overwhelmed, scared, or uncertain about the future. FAP is a complex genetic condition that requires lifelong management, but it is also one of the most well-understood genetic cancer syndromes in medicine. Because doctors know exactly how FAP behaves, they can provide a proactive, life-saving roadmap to prevent cancer.

This guide is designed to empower you with the knowledge you need to advocate for yourself and your family. It translates the medical data into a practical strategy, helping you understand your diagnosis, evaluate your treatment options, and prepare for the road ahead.

Navigating This Guide

To help you understand your diagnosis and care plan, we have broken down the journey into specific topics. You can read them in order or jump straight to the information you need right now:

Understanding the Basics of FAP

Learn the basics of Familial Adenomatous Polyposis (FAP). Understand how the APC gene mutation causes colon polyps, inheritance patterns, and what to expect.

Navigating the Different Faces of FAP

Learn about the different types of Familial Adenomatous Polyposis (FAP). Understand Classic FAP, Attenuated FAP, Gardner Syndrome, Turcot Syndrome, and MAP.

FAP Beyond the Colon: Other Signs and Risks

Learn about FAP symptoms beyond the colon. Understand extracolonic manifestations like desmoid tumors, thyroid risks, eye freckles, and screening protocols.

Genetic Testing: A Roadmap for You and Your Family

Learn about genetic testing for Familial Adenomatous Polyposis (FAP). Understand diagnostic vs. predictive testing, when to test children, and the APC gene.

Surgical Options: Preventing Cancer and Protecting Your Health

Learn about life-saving FAP surgery options to prevent colon cancer. Understand the pros and cons of TAC-IRA vs. J-pouch procedures and life after surgery.

Your Lifelong Roadmap: Monitoring and Surveillance

Learn the lifelong monitoring roadmap for Familial Adenomatous Polyposis (FAP). Understand guidelines for colonoscopies, upper endoscopies, and post-surgery.

You are not alone in this. By understanding the biology of your condition and the steps needed to protect your health, you can work effectively with your medical team to live a long, full life.

Common questions in this guide

What is Familial Adenomatous Polyposis (FAP)?

FAP is a genetic condition that causes hundreds to thousands of polyps to form in the colon. Because doctors understand exactly how the condition behaves, they can provide a proactive, life-saving medical plan to prevent colorectal cancer.

How is FAP treated to prevent cancer?

The standard of care to prevent colon cancer in FAP patients is surgery to remove the colon. Common surgical options include an ileorectal anastomosis (IRA) or a J-pouch, which remove the highest-risk tissue while striving to maintain your quality of life.

Does FAP affect other parts of the body besides the colon?

Yes, the gene mutation that causes FAP can affect other parts of the body. These are known as extracolonic features and can include desmoid tumors, polyps in the upper gastrointestinal tract, thyroid risks, and harmless eye spots called CHRPE.

Should my children be tested for FAP?

Because FAP is an autosomal dominant genetic condition, children of an affected parent have a 50% chance of inheriting the gene. You should work with a genetic counselor to determine the safest and most appropriate timeline for testing your children.

How often will I need medical screenings if I have FAP?

FAP requires a lifelong roadmap of regular medical surveillance to catch any issues early. Your specific schedule will depend on your exact diagnosis, but it typically involves frequent endoscopies, colonoscopies, and imaging to monitor your digestive tract.

Curated prompts to bring to your next appointment.

1.How does my specific FAP diagnosis shape my overall care plan for the next year?
2.Who will be the "quarterback" of my medical team coordinating all my different screenings?
3.Are there any clinical trials or FAP patient registries you recommend I look into?

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

This guide provides an educational overview of Familial Adenomatous Polyposis (FAP). Always consult your genetic counselor, gastroenterologist, or surgical oncologist to develop a personalized screening and care plan.

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Guide Contents