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PubMed This is a summary of 78 peer-reviewed journal articles Updated
Gastroenterology

Navigating Familial Adenomatous Polyposis (FAP): A Comprehensive Guide

At a Glance

Familial Adenomatous Polyposis (FAP) is an inherited genetic condition caused by an APC gene mutation. While it requires lifelong surveillance and often proactive surgery to prevent colorectal cancer, patients can maintain a good quality of life with specialized, coordinated medical care.

Receiving a diagnosis of Familial Adenomatous Polyposis (FAP) can be overwhelming. This guide is designed to empower you with the evidence-based knowledge you need to navigate this lifelong condition, make informed decisions about your care, and actively partner with your medical team.

Please explore the following sections to understand your diagnosis, treatment options, and long-term care plan:

01

Your Guide to a New FAP Diagnosis

Just diagnosed with Familial Adenomatous Polyposis (FAP)? Learn how to manage this genetic condition, understand surgical options, and what to ask your doctor.

02

The Genetics of FAP: How It Happens and How It Is Inherited

Learn about the genetics of Familial Adenomatous Polyposis (FAP). Understand how APC gene mutations cause polyps and how FAP is inherited in families.

03

FAP Beyond the Colon: Other Organs at Risk

Learn about FAP extracolonic manifestations. Understand how the APC gene mutation affects the duodenum, stomach, thyroid, eyes, and causes desmoid tumors.

04

Decoding Your GI and Pathology Reports

Learn how to decode your FAP GI and pathology reports. Understand key terms like dysplasia, adenoma, and how your Spigelman Stage score is calculated.

05

Surgical Options: Preventing Cancer and Preserving Function

Learn about surgical options for Familial Adenomatous Polyposis (FAP), including IRA and J-Pouch procedures. Compare pros, cons, and cancer prevention rates.

06

Life After Surgery: Long-term Care and Quality of Life

Learn what to expect after surgery for Familial Adenomatous Polyposis (FAP). Understand lifelong surveillance, J-pouch care, and managing scan anxiety.

Common questions in this guide

What causes Familial Adenomatous Polyposis (FAP)?
FAP is caused by an inherited genetic mutation in the APC gene. This mutation leads to the formation of numerous polyps in the colon and potentially other organs throughout the body.
Should my family members be tested for FAP?
Yes, because FAP is an inherited genetic condition, it is highly recommended that close family members are informed of your diagnosis so they can pursue their own genetic counseling and testing.
What are the surgical options for managing FAP?
The primary surgical options to prevent colorectal cancer in FAP patients involve removing the colon, with procedures such as an Ileorectal Anastomosis (IRA) or a J-Pouch. The best option depends on your specific polyp burden and medical situation.
Do FAP polyps only grow in the colon?
No, patients with FAP can develop manifestations outside of the colon. This includes duodenal polyps, desmoid tumors, and issues requiring monitoring of the thyroid and eyes.
What kind of doctors should manage my FAP care?
Because FAP is a complex, multi-organ condition, your care should ideally be coordinated by a specialist at a hereditary colorectal cancer center. Your care team will usually include a gastroenterologist, a colorectal surgeon, and a genetic counselor.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Who will act as the 'quarterback' for my care team to coordinate between my gastroenterologist, surgeon, genetic counselor, and primary care doctor?
  2. 2.Are you or your institution experienced in treating FAP, or should I consider seeking a consultation at a specialized hereditary colorectal cancer center?
  3. 3.What are the immediate next steps in my screening and treatment plan?

Questions For You

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This guide is for informational purposes only and is intended to help you navigate a Familial Adenomatous Polyposis (FAP) diagnosis. It does not replace professional medical advice from your gastroenterologist or genetic counselor.

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