Key Points

  • FAP is a rare condition associated with multiple bowel polyps or outgrowths from the lining of the large bowel
  • There are different types of bowel polyps that can occur in the large bowel or colon.  The type of bowel polyp a person has is determined by looking at a sample (biopsy) of the polyp under a microscope
  • People with FAP develop adenomatous bowel polyps, hence the name of this condition
  • People with FAP usually develop multiple large bowel polyps before the age of 20 years
  • Adenomas in the general population do not usually occur until the age of 40–50 years and then only in small numbers
  • Without treatment, individuals with FAP will inevitably develop bowel cancer in mid-life
  • Cancer occurring in individuals with FAP accounts for less than 1% of all bowel cancer
  • Bowel surgery prevents individuals with FAP from developing bowel cancer.  This surgery is normally recommended in the later teenage years
  • Yearly bowel screening is required for the part of the large bowel that remains to prevent cancers developing
  • People with FAP have up to a 4-5% risk of developing upper gastrointestinal cancer in their lifetime and should have regular upper gastrointestinal endoscopy from the age of 25-30 years
  • FAP is caused by an alteration in the APC gene. The alteration in the gene means that it cannot do its job properly
  • Up to 30% of people with FAP do not have a family history of the condition, i.e. they are the first person in their family to develop an alteration in the APC gene
  • Once present, FAP is a dominantly inherited condition.  This means that if you have FAP each of your children has a 1 in 2 (50%) chance of developing FAP
  • Genetic testing to try and identify an abnormality in the APC gene is available for families with this syndrome

The aim of the NZFGCS is to reduce the number of cancers occurring in families by facilitating the required bowel screening for registered families

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