The Lynch Syndrome Clinic at St Mark’s, the National Bowel Hospital, looks after patients with Lynch Syndrome. The focus of this service is to provide people and families with this condition with lifelong multidisciplinary care with the aim of early diagnosis and prevention of cancer.  We work within the Family Cancer Clinic, and closely with colleagues in the Polyposis Registry. We see people from both from our local geographical region and also from elsewhere in the United Kingdom.

Our information sheet about Lynch Syndrome can be found here: Lynch syndrome leaflet

What is Lynch syndrome?

Lynch Syndrome is caused by inherited genetic alterations which may predispose people to cancer. Most people with Lynch syndrome (LS) are well, but someone with LS has a higher chance of developing certain cancers in their lifetime than someone their age in the general population. However there is much that we can do to prevent cancer in people with Lynch Syndrome.

Cancer is unfortunately common, with around one in twopeople developing it during their lifetimes. Colorectal cancer, affecting the large bowel or rectum, occurs in around 1 in 16 people, but usually amongst older people. 

Most colorectal cancers are not inherited, but are due to environmental factors. However, around 15% to 30% are thought to be due to inherited genetic factors and around 3% are caused by Lynch syndrome. This was previously also known as hereditary non-polyposis colorectal cancer or HNPCC.

People with Lynch syndrome may develop polyps (a small benign growth) in the lining of the bowel, although not as many as patients affected by another inherited condition, called Familial Adenomatous Polyposis (FAP).

Other cancers which may be associated with Lynch syndrome include:

• Endometrial (Womb)
• Ovarian
• Stomach
• Small bowel
• Bile duct/gall bladder
• Brain
• Pancreas
• Urothelial (kidney, ureter and possibly bladder)
• Skin

Some people with Lynch syndrome may have more than one primary cancer.

Genetic testing

The genes that cause Lynch syndrome include MLH1, MSH2, MSH6, PMS2 and EpCAM. A diagnosis of Lynch Syndrome is defined by the identification of a ‘pathogenic’ (disease causing) variant in just one of these genes. 

The genetic testing pathway usually starts with tumour tissue from people diagnosed with colorectal cancer or a cancer associated with Lynch syndrome, and may take several months. 

Your risk of developing cancer varies depending on which gene in implicated in your families’ diagnosis, and other factors including your gender and your current age. Further information about your gene-specific risk can be found by accessing the www.plsd.eu website.

Lifelong clinical review

We aim to provide lifelong clinical review and a point of contact for people with Lynch Syndrome known to our service. Otherwise people with Lynch Syndrome often attend for 2-yearly colonoscopy but may have little contact with clinical teams following their initial diagnosis.

When you attend for your colonoscopy please complete the Lynch Syndrome Questionnaire.

We use this information both to help ensure you receive optimal care, and communicate with you and other healthcare professionals. If you are not undergoing regular colonoscopy, for example if you have had bowel surgery, or you are below the age where we usually start regular colonoscopy, then please feel free to complete and return this questionnaire so it may form part of your regular clinic review.

Multidisciplinary care

Our local team includes doctors, nurses, genetic counsellors and clinical geneticists. We also work closely with specialist gynaecologists, dermatologists and other specialists with an interest in Lynch Syndrome, and try to identify an appropriate specialist who lives in your area.

We have a weekly multidisciplinary team meeting on Tuesday mornings where we discuss the clinical management of people with Lynch Syndrome.

Gene-specific management

We aim to offer clinical management of Lynch Syndrome which is personally designed (sometimes called ‘personalised care’). Gene specific information sheets for people with the following specific genetic risk factors may be requested.

National Guidelines

We have recently led, or been a key part of two new key guidelines for the management of people with Lynch Syndrome:

BSG Guidelines for Hereditary Bowel Cancer and Lynch Syndrome

International Guidelines for Gynaecological Cancer Risk in Lynch Syndrome

Research Projects

We are leading a number of national and international research projects designed to help prevent cancer in people with Lynch Syndrome, such as the LINC study (Lynch Cancer prevention study). We also participate in prevention and registration studies led by others, including the CAPP study and PLSD.

Please contact us if you are interested in participating in any of these projects.

Get in touch

If you are known to the Lynch Syndrome Clinic, then please don’t hesitate to get in touch if you feel we can help you or if you have any questions. Please let us know if there are changes to your personal circumstances, such as a change of address, a new cancer diagnosis or genetic diagnosis in your family. If you are concerned about new symptoms you should speak to your GP in the first instance, but please feel free to inform us as well.

General Enquiries: 020 8235 4266
E-mail: lnwh-tr.SMFCC@nhs.net

If you have not received an appointment as expected, then please try the appointments team in the first instance. However please inform us if they have not been able to resolve this issue.

Location within the hospital

The Lynch Syndrome Clinic Offices lie within the Family Cancer Clinic in Level 5 of St Mark’s Hospital. 

The team

Dr Kevin Monahan
Consultant Gastroenterologist
Lynch Syndrome Clinic

Professor Huw Thomas
Family Cancer Clinic Director
Consultant Physician

Dr Andrew Latchford
Consultant Gastroenterologist

Vicky Cuthill
Lead Cancer Genetics Nurse
Unit Manager

Menna Hawkins
Cancer Genetics Nurse

Dr Angela Brady
Consultant Clinical Geneticist

Demetra Georgiou
Genetic Counsellor

Carleen Tsolu and Elizabeth Goodband
Administrators

Further information

• Lynch Syndrome Questionnaire (for your clinical review)
• Family Cancer Clinic
• Polyposis Registry
• Lynch Syndrome UK
• Bowel Cancer UK

The Bobby Moore Database

If you attend this clinic we will maintain a confidential record of your personal and family history on a cancer registry called the Bobby Moore Database. This helps to ensure that your colonoscopy is performed in a timely fashion, and that the results of colonoscopy are monitored. We also use this registry regularly review whether further genetic testing may be helpful in people known to our service. There is good evidence that the use of cancer registries reduces the risk of people developing cancer and also improve the likelihood of people surviving cancer.

We may also invite people in the registry to patient information events.

Privacy Notice

For information on Personal Data and Transparency please see the LNWUHNT Privacy Notice here: https://www.lnwh.nhs.uk/privacy/

We have permission to process personal data under Articles 6 and 9 of the General Data Protection Regulation. Identifiable personal data is processed under Articles 6(1)(e) and 9(2)(j) of the General Data Protection Regulation.

We have permission from the Secretary of State for Health, on the advice of the Confidentiality Advisory Group, to share patients’ identifiable data (NHS Number, name and date of birth) with NHS Digital in order to receive information from NHS Digital on cancers that develop in our cohort of patients who are undergoing colonoscopic surveillance for an increased familial risk of colorectal cancer [and details of any deaths including date and cause]. This is to ensure that we have an up-to-date and complete set of information. This is important as this might lead to a change in the surveillance protocol for the patient and / or their family. It also allows us to trace patients who have been lost to follow-up. The data is retained on the LNWHNT’s clinical IT system.

The data is used to support the surveillance programme only and is not shared with any third party organisations in identifiable form. Data from which the identifiers have been removed and replaced with a unique patient ID is shared with a statistician at Kings College University of London who supports the Family Cancer Clinic by analysing the outcomes of colonoscopic surveillance in different familial risk groups and in different genetic conditions. The data is not otherwise shared with any other third parties.

If you have any queries about this or do not wish us to receive this information from NHS Digital please email the Family Cancer Clinic on the address below. We can withdraw your name so that we do not receive the information. Your colonoscopic surveillance protocol will be unaffected but we may not have a complete data set in the future and may not be able to contact you if you move to a new address without letting us know.

We are compliant with the Data Protection Act. If you are unhappy with any aspect of the use of your data you may contact the Data Protection Officer at London North West University NHS Trust:

E-mail: lnwh-tr.informationgovernance@nhs.net

Other pages:
History of the Polyposis Registry
Polyposis Information Day
Lynch Syndrome Information Evening