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 75y 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 50y 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 

Who is Referred

 

Individuals at potentially high risk of developing bowel or other gastrointestinal (GI) cancers

 

Why you may have been referred?

  • You may have a history of a number of family members over two or three generations being affected with bowel or other gastrointestinal cancers eg stomach, pancreas
  • You or a close family member have been diagnosed with bowel or other gastrointestinal cancer at a young ag
  • There is concern that you and your family may have a genetic bowel or gastrointestinal cancer syndrome
  • There is a known genetic gastrointestinal cancer syndrome in your family
  • Potentially at high risk for developing bowel cancer as defined in the guidelines for surveillance and management of groups at increased risk for CRC.

What We Do

  • Offer assessment of bowel cancer risk for people with a family history of GI cancer
  • Facilitate the diagnosis of hereditary cancer by confirming the family history
  • Offer surveillance recommendations
  • Co-ordinate surveillance for high-risk families
  • Offer specialist management advice
  • Provide information for families on familial GI cancer

Who can join

Who can join the Surveillance reminder Programme

Anyone whose family has been assessed to have an increased risk of developing a GI cancer and who is identified to be an at risk individual within that family ie those with

  • A clinical diagnosis of classic or attenuated Familial Adenomatous Polyposis (FAP)
  • Known or possible Hereditary Non Polyposis Colorectal Cancer (HNPCC)
  • Known Lynch Syndrome
  • Multiple small or large bowel polyps where a familial syndrome is suspected eg Peutz – Jeghers syndrome,hyperplastic polyposis
  • Family history of other GI cancer syndromes eg diffuse gastric cancer, pancreatic cancer
  • Potentially at high risk for developing bowel cancer as defined in the guidelines for surveillance and management of groups at increased risk for CRC guidelines 2012

Participation in the Service is by written consent

You may opt out at any time without it affecting your future healthcare

How Will The Service Help Me

  • We offer specialist management advice to assist in your care
  • We will clarify your family’s level of risk for developing bowel or other gastrointestinal cancers by confirming your family history
  • We will facilitate genetic testing where appropriate
  • We will determine if you and your family would benefit from regular screening to prevent cancer
  • If you are identified to be at high risk of developing gastrointestinal cancer we will offer to co-ordinate your bowel screening because research has shown that this can save lives
  • We are able to provide information for families on familial GI cancer