The Lynch Syndrome Clinic

Vicky Cuthill is the Lead Cancer Genetics Nurse and Unit Manager

For the The St Marks Centre for Familial Cancer, click here
We have a dedicated website: www.polyposisandlynch.com

The Lynch Syndrome Clinic

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.

Read the Lynch Syndrome Information For Patients here

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 two people 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 and gall bladder, brain, pancreas, urothelial (kidney, ureter and possibly bladder) and skin.

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

Genetic testing

The genes that cause Lynch syndrome include MLH1MSH2MSH6PMS2 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.

Dr Kevin Monahan working in the Endoscopy Department at St Mark’s

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.

Our Location

The St Mark’s Centre for Familial Intestinal Cancer is based in Central Middlesex Hospital Site, Acton Lane, Park Royal. St Mark’s is a world-renowned specialist hospital for patients with gastrointestinal conditions.

Contact

Website: www.polyposisandlynch.com
Email: LNWH-tr.SMCFIC@nhs.net
Tel: 020 8453 2656
Twitter or X: @PolyposisRegUK
Address: St Mark’s Centre for Familial Intestinal Cancer, St Mark’s Hospital, Central Middlesex, Acton Lane, Park Royal NW10 7NS

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.

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)

Administrators: Carleen Tsolu, Elizabeth Goodband

Further information

Lynch Syndrome Questionnaire (for your clinical review)
The St Marks Centre for Familial Cancer
External websites
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. Email: lnwh-tr.informationgovernance@nhs.net

Further information

Polyposis Information Day
Lynch Syndrome Information Evening

The History of the Polyposis Registry

The Polyposis Registry at St Mark’s Hospital represents possibly the longest running research project in the world. It began in 1924 when a Pathologist, Dr Cuthbert Dukes, and Mr J.P. Lockhart-Mummery, a surgeon, discussed some patients they thought to be both interesting and rare. These patients not only had multiple polyps in the bowel but also a family history of bowel cancer.

Dr Dukes was already involved in the science of polyps and cancer, and in his laboratory at St Mark’s he set the groundwork for much of the science that continues today. Mr Lockhart Mummery added to this his knowledge of recording family histories and together they set up a formal system for collecting information. They were helped by Dr Dukes’ laboratory assistant, the young HJR Bussey. This young man developed such a fascination for polyposis that by the 1960s he had been awarded a PhD for his work in polyposis and become world famous for his knowledge about the condition.

In those early days, St Mark’s Hospital was supported by voluntary contributions but today it is, of course, part of the National Health Service (NHS). The NHS does not, however, support research into polyposis. The money for this comes from charities such as Cancer Research UK and the St Mark’s Hospital Foundation.