What is Familial Gastrointestinal Cancer?

Gastrointestinal cancers are those that occur in the digestive system – that is the oesophagus, stomach, small bowel, pancreas and the large bowel – also called the colon and sometimes colorectum. The most common of these is bowel cancer.

Familial Gastrointestinal Cancer is the cancer that runs in families.  Some types of Familial Gastrointestinal Cancer are inherited, this is where there is a known cancer syndrome.

Everyone has a risk of developing cancer but most cancer is not familial, i.e. it does not run in families.  A small proportion of cancer (about 10-15 %) is thought to be due to inherited factors.  In New Zealand the chance of developing bowel cancer by the time you are 75 years of age is 6%. Sometimes there is a family history but the diagnosis occurred at an older age and there is no clear pattern from parent to child. Although the cancer may appear to be more common than you would expect to see in these families this may not be due to inherited factors. It can be due to chance and shared environmental factors – such as diet, smoking and exercise as families tend to have similar habits.

Sometimes there is a really clear family history with more than one generation affected and diagnoses occurring at a young age (in genetics under 50 years is considered young). Having a parent, brother, sister or child with cancer may increase your chance of developing a cancer, particularly if they were young when first diagnosed. In a small number of families there is an inherited mutation (gene problem) that increases your chance of developing cancer.

Many people over estimate the chance of developing cancer and it is important that if you are concerned you seek expert advice as to the likelihood of developing cancer for you and other family members.

HNPCC Information Sheet 

What does the New Zealand Familial Gastrointestinal Cancer Service do?

We work with gastroenterology, surgical and genetics specialists across the country along with patients and their families, aiming to reduce the incidence of gut cancers that develop.  We provide advice in inherited conditions that predispose to cancers of the gut, keeping up to date with the latest international recommendations.  We contribute to research into these conditions and participate in the international societies that make recommendations so that New Zealanders can receive the most accurate advice.

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Who is referred?

You may have a history of family members over two or three generations with bowel or polyposis or other gastrointestinal cancers e.g., stomach, pancreas

You or a close family member have or may have:

  • more bowel polyps than usual
  • a gastrointestinal cancer
  • an inherited gastrointestinal cancer syndrome

Who can join the surveillance reminder programme?

  • Anyone we have assessed as high risk of developing a gastrointestinal cancer and who is an at risk individual within that family e.g., those with:
    • known or possible Lynch syndrome
    • a clinical diagnosis of Familial Adenomatous Polyposis (FAP) or MYH Associated Polyposis (MAP)
    • multiple small or large bowel polyps where a familial syndrome is suspected e.g., Peutz – Jeghers syndrome, serrated polyposis
  • Participation in the surveillance programme is by written consent after full assessment. You may opt out at any time without it affecting your future healthcare
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How can the service help you?

  • Offer specialist advice to assist in your care
  • Clarify your family’s level of risk for developing gastrointestinal cancers or polyposis by confirming your family history
  • Advise if you and your family would benefit from regular screening to prevent cancer 
  • If you are found to be at high risk of developing gastrointestinal cancer polyps we will offer to co-ordinate your bowel screening (colonoscopy) because research has shown that this can save lives
  • We provide information for families on familial gastrointestinal cancer
  • We work with your Doctors to ensure you get the best advice and care