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Bowel Cancer and Lynch Syndrome: is enough being done?


    Rosie Blacker considers the findings and implications of a recent report of failings in NHS hospitals to carry out recommended genetic testing when a patient under the age of 50 is diagnosed with bowel cancer.

    By Rosie Hodgetts

Although there has been wide coverage in the press about the risk of bowel cancer in those ages over 50, it is less well known that each year in the UK more than 2400 people under the age of 50 are diagnosed with the disease. It is the forth most common cancer and there is a recognised increased risk for those with Lynch Syndrome, a genetic condition. Despite this, I was shocked to read that, in a recent study published by Bowel Cancer UK and The Royal College of Pathologists, there are still 40 hospitals in England not doing the necessary tests for Lynch Syndrome which means many people are not being advised they may be at increased risk of developing cancer and being monitored.

What is bowel cancer?

Cancer Research UK explains that Bowel cancer refers to cancer of either the large bowel (colon) or rectum and can also be referred to as colorectal cancer.

The bowel walls are made up of several layers of tissue and bowel cancers ordinarily begin with a small growth in the innermost layer, the lining. If the growth is left untreated it can become cancerous and grow into the muscle layers before progressing through the bowel wall.  From here, cancer can then spread throughout the rest of the body through the lymphatic system or blood stream. Although, ordinarily, it spreads into the organs that are closest to the bowel such as the bladder, womb or prostate gland, it can spread further to the liver and other organs.

Doctors believe that most bowel cancers take between 5 to 10 years to develop and, if the cancer is caught early it can, in the majority of cases be successfully treated.

What is Lynch Syndrome and Why Should Doctors Test for It?

Lynch Syndrome, also referred to as hereditary nonpolyposis colorectal cancer (HNPCC), is a hereditary condition which increases an individual’s likelihood of developing, amongst other forms of cancer, bowel cancer, and also increases the risk of re-occurrence of bowel cancer. The syndrome itself has no symptoms and, it has been suggested that fewer than 5% of people with Lynch Syndrome have been identified in the UK.

If there is a family history of the development of certain cancers under the age of 50, it has been suggested that the affected family may have the faulty gene causing Lynch Syndrome.

Genetic testing can be carried out to identify if an individual has Lynch Syndrome. Guidelines published by The Royal College of Pathologists in 2014 state that testing should be carried out automatically on all people diagnosed with bowel cancer under the age of 50 at the time of diagnosis.

It is believed that performing this type of test it will assist both the individual diagnosed with cancer as it will help to detect the risk of recurrence of the disease and also guide the treatment for disease, and also their family members. It is believed that if an individual has Lynch Syndrome there is a 50% chance that their children or siblings will also have the condition.

Knowing that you have the condition can be potentially life saving as it means you can undergo regular monitoring for any pre cancerous changes and, hopefully, detect and begin treatment for any cancer that develops in a timely manner.

What does the recent study show?

This latest study has shown that although 110 out of 156 hospitals in the UK are now providing a test for Lynch Syndrome when an individual under the age of 50 is diagnosed with bowel cancer, at least 40 hospitals are not. Equally, the standard of testing is varying between hospitals.

These results are very concerning and as clinical negligence solicitors we all too often see the devastating effect a delay in diagnosing bowel cancer can cause. We fully support the call for all individuals under 50 diagnosed with bowel cancer to be automatically tested for Lynch Syndrome and that hospitals should be supported to ensure that this happens.

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