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Improving diagnosis of Lynch syndrome could help catch bowel cancer early

To coincide with bowel cancer awareness month, the newly merged charity Bowel Cancer UK and Beating Bowel Cancer warns that while people with the genetic condition called Lynch syndrome have 80% risk of bowel cancer many hospitals are not following national guidelines on testing

To coincide with bowel cancer awareness month, the newly merged charity Bowel Cancer UK and Beating Bowel Cancer warns that while people with the genetic condition called Lynch syndrome have 80% risk of bowel cancer many hospitals are not following national guidelines on testing


Picture: iStock

Cancer nurses are being urged to improve awareness and diagnosis of a genetic condition that sharply increases the risk of bowel and a number of other cancers.

People with Lynch syndrome have a lifetime bowel cancer risk of 80%, and higher risks of a number of other cancers, particularly of the womb, ovaries, stomach, and pancreas.

80%

Lifetime risk of developing bowel cancer for people with Lynch syndrome

(Source: Bowel Cancer UK and Beating Bowel Cancer)

The newly merged charity Bowel Cancer UK and Beating Bowel Cancer is warning that this increased risk means people with the genetic condition are likely to develop multiple cancers over their lifetime and at a younger age, with the average age of diagnosis only 45 years old.

Teenage cancer fundraiser Stephen Sutton, who died of bowel cancer at 19, had Lynch syndrome. 

While 175,000 people are thought to have the condition in the UK, 95% do not know as there is a lack of NHS testing. 

Testing guidelines

In February 2017, the National Institute for Health and Care Excellence (NICE) recommended that everyone in England newly diagnosed with bowel cancer should be tested for Lynch syndrome. 

Wales and Northern Ireland follow NICE guidelines, and in Scotland the Scottish Molecular Pathology Consortium recommends those diagnosed under the age of 60 are referred for testing. 

The charity sent out freedom of information requests to more than 370 hospitals and NHS funding organisations across the UK to find out if hospitals are testing bowel cancer patients for Lynch syndrome. 

95%

People with Lynch syndrome who do not know they have the condition

(Source: Bowel Cancer UK and Beating Bowel Cancer)

They revealed that only 22 hospitals (17%) in England follow best practice to test bowel cancer patients for Lynch syndrome at diagnosis and none of the health boards in Wales said all bowel cancer patients are tested.

In Scotland, 50% of health boards test bowel cancer patients under 60, and a further 43% of boards go beyond the national guidance to test all bowel cancer patients.

In Northern Ireland, only one trust tests all bowel cancer patients, while the other four trusts test those who develop the condition under the age of 50.

Funding and staff capacity were the most frequent barriers to testing cited by the NHS organisations.

Boosting diagnosis

Once a person is diagnosed with Lynch syndrome they will be offered regular colonoscopies from the age of 25 so that cancer can be picked up early and treated. 

£200

Cost per patient to test for Lynch syndrome

(Source: Bowel Cancer UK and Beating Bowel Cancer)

Colorectal clinical nurse specialist Charlotte Dawson, who works as head of support and information for Bowel Cancer UK and Beating Bowel Cancer, says that nurses have a major role to play in boosting the number of people diagnosed with Lynch syndrome.

She encourages nurses working in bowel cancer services to know where their nearest genetic or family cancer service is, and where patients can be referred to receive support and information before, during and after the testing process. 

‘If you are working in a colorectal team or in primary care, when you see a patient with bowel cancer ask them if they have been tested,’ she says. ‘It can be difficult as patients may worry about being tested and the ramifications for their families if it is positive. But the risk of bowel cancer goes up to 80% so it is so important to get tested and prevent the disease from occurring.’

Lynch syndrome

Lynch syndrome, also known as hereditary non-polyposis colorectal cancer, is the most common cause of hereditary bowel cancer. But less than 5% of cases are linked to the condition.

Lynch syndrome is caused by an alteration in a gene called a mismatch repair gene, which normally helps prevent people developing cancer.

If a person is diagnosed with Lynch syndrome their close relatives have a 50% chance of also carrying the altered gene.

It may be suspected if:

  • At least two relatives on the same side of the family have had bowel cancer.
  • A family member developed bowel cancer at a young age (under 50).
  • There are cases of bowel and womb cancer on the same side of the family.
  • Three or more relatives on the same side of the family have had one Lynch syndrome-type cancer. 

(Source: Macmillan Cancer Support)


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