Lynch Syndrome for patients
What is Lynch Syndrome?
Lynch Syndrome is an inherited genetic condition that increases a person’s risk of developing certain types of cancer. The most common cancers associated with Lynch Syndrome are colorectal (bowel) cancer and, in women, endometrial (womb) cancer. There is also a slightly increased risk of ovarian and other cancers, depending on the specific gene involved. Risk levels vary between individuals and are influenced by factors such as gender, family history, and lifestyle.
I t’s important to understand that not everyone with Lynch Syndrome will develop cancer. However, knowing about the condition means that we can offer you screening to detect many problems at an early stage, when they are more treatable. There is also a huge amount of research in progress to find new ways of screening for developing cancers.
Managing Your Health with Lynch Syndrome
Your care plan will be tailored to your specific genetic findings. Not everyone will need the same screening, and your healthcare team will guide you through what’s appropriate for you.
Key Screening and Monitoring Options
1. Bowel Screening
All individuals with Lynch Syndrome should be registered with the National Bowel Cancer Screening Programme. This service has been set up specifically for individuals with Lynch Syndrome, and they will invite you for a colonoscopy (camera test for the large bowel) once every 2 years. These procedures are carried out by specialists trained to detect the subtle changes associated with Lynch Syndrome, and every effort is made to ensure the process is as comfortable as possible.
2. Prostate Screening
Some Lynch Syndrome genes (particularly MLH1 and MSH2) are linked to a higher risk of prostate cancer. Men with these gene variants may wish to discuss annual PSA (Prostate Specific Antigen) blood tests with their GP from the age of 40. PSA is a screening tool and may lead to further tests if levels are elevated. More information is available at www.nhs.uk/conditions/psa-test.
3. Skin Monitoring
Lynch Syndrome is also associated with some very specific skin changes (sebaceous neoplasms and keratoacanthomas). If you, or a family member with Lynch Syndrome develops a Lynch related skin lesion, it would be important for you and your relatives to be seen by your local dermatology team. They can advise on what to look out for and when to seek further assessment.
4. Symptom Awareness
Being aware of symptoms that could be linked to Lynch Syndrome is vital. If you experience persistent or unusual symptoms, seek medical advice promptly and mention your diagnosis. Additional resources and symptom checklists are available on this site.
How Can I Reduce My Risk of Cancer with Lynch Syndrome?
If you have Lynch Syndrome, there are several proactive steps you can take to lower your risk of developing cancer. These include medical treatments and lifestyle changes.
1. Test for a common stomach bacteria called Helicobacter Pylori (H. pylori)
H pylori is a bacteria that can live in the stomach. It may not cause any symptoms, but its presence is linked with indigestion and stomach ulcers. We know that infection with this particular bacteria is associated with an increased risk of stomach cancer, as it causes chronic inflammation in the stomach.
We recommend everyone with Lynch Syndrome has a test for this bacteria (by stool or breath test ideally). If the bacteria is found, a short course of antibiotics (usually two weeks) can clear the infection. This is typically a one-time treatment.
2. A daily dose of Aspirin
A daily dose of aspirin has been shown to reduce the of risk bowel cancer in Lynch syndrome by around half, and it also lowers the risk of other Lynch Syndrome-associated cancers. The protective effect was seen in individuals who took aspirin for two - four years, and can continue after they had stopped the aspirin.
We strongly recommend all individuals with Lynch syndrome take aspirin, unless there is a good medical reason not to.
Current guidance:
- 150 mg daily if you weigh under 70 kg
- 300 mg daily if you weigh over 70 kg
This is higher than the standard 75 mg dose. The CaPP3 study is ongoing, and is aiming to work out the most effective dose for people with Lynch Syndrome> They have begun to release some of their results now. We are hoping to clarify if a small dose of aspirin (75mg) is sufficient to reduce the risk of cancers.
We recommend aspirin is taken between the ages of 18 to 60 years. The benefits and risks can be reviewed after this, but use beyond the age of 70 is inadvisable. This is because it does not seem to have the same protective effect against cancer after 70 years, and the risk of side effects increases after this age (particularly after 65 years).
Important: Before starting aspirin, you should:
· Have your blood pressure checked
· Be tested for H. pylori
· Discuss with your GP to ensure it’s safe for you, even if you plan to buy it over the counter
3. Preventative surgery (Womb, ovaries and fallopian tubes)
Depending on your specific gene variant, you may be at increased risk of womb or ovarian cancer. Currently, there are no reliable screening methods for these cancers.
Some individuals may consider preventive surgery to remove the womb, ovaries, and fallopian tubes, typically after age 35–40, when the risk begins to rise. This is a personal and complex decision that should be made in consultation with a gynaecologist, taking into account:
· Your family history
· Menopause status
· Other medical factors
If you're considering this option, please contact our team for a referral when the time is right
4. Lifestyle Changes
Lifestyle changes are also very important when it comes to reducing our cancer risk. We know that being over your healthy weight increases your cancer risk. We recommend avoiding smoking and minimising alcohol intake, as these will all lower the risk of cancer.
You should try to minimise the amount of red and processed meat in your diet. There is also evidence showing that increasing dietary fibre and resistant starch in particular, is beneficial in Lynch Syndrome. This might not be suitable for individuals who have had bowel surgery. Please see the helpful resources section for more information.
How is Lynch Syndrome Inherited?
Lynch Syndrome is inherited in what is known as an autosomal dominant fashion. This means that there will be a 50% chance of a child being affected with this condition, if their parent is. Because Lynch Syndrome runs in families, we recommend that close relatives are offered genetic testing to check whether they carry the same gene change. We will provide you with a letter that you can share with your relatives, which includes information on how to arrange an appointment at their local Clinical Genetics Centre.
When Should Genetic Testing Be Considered in a Relative?
Genetic testing is usually offered to individuals who are old enough to make an informed decision—typically from adulthood. While bowel screening for Lynch Syndrome begins at age 25, some people may wish to consider testing from age 18, especially if they are thinking about starting aspirin as a preventive measure.
Before testing, individuals will be offered a genetic counselling appointment. This provides an opportunity to learn more about Lynch Syndrome, understand the implications of testing, and discuss practical considerations—such as how a result might affect things like insurance applications.
Family planning
There are options when planning a family. This includes testing in a pregnancy and an IVF type procedure to ensure a baby does not inherit Lynch Syndrome. We are happy to discuss these options with individuals if they would like. We recommend you meet with us prior to becoming pregnant.
Helpful Resources
Lynch Syndrome App
There is an app developed by Lynch Syndrome UK and East Genomics which has much more information and is a good resource to have at your fingertips. It allows you to keep track of your screening and this can be downloaded from app stores.
Download the Lynch Syndrome app here
LSUK
www.lynch-syndrome-uk.org
Lynch Syndrome UK is a charity that aims to provide information and support for individuals with Lynch Syndrome. There is lots of information about Lynch Syndrome on their website.
Bowel Cancer UK
www.bowelcanceruk.org.uk
Lots of information about bowel cancer, with some specific information on Lynch Syndrome.
East Genomics Network
www.eastgenomics.nhs.uk
Some specific Lynch resources for patients and health professionals, and includes link to East Midlands Lynch Syndrome Expert Network
RM partners
rmpartners.nhs.uk
Lots of information on Lynch Syndrome including the testing required to make a diagnosis.
UK Cancer Genetics Group
www.ukcgg.org
Clinical guidance for each particular Lynch Syndrome gene for health professionals. Links to information and tips for healthy eating in the info and education section.
NUH Lynch Syndrome Leaflet
Genetics leaflets can be found on the NUH website here
Symptoms to watch out for
Please remember that these symptoms do not necessarily mean that you have cancer, but you should speak with your GP and mention you have Lynch Syndrome if they occur and are persistent. It is important to do this even if you have recently had a colonoscopy or are due to have a colonoscopy in a few months. The routine bowel cancer screening is not a test for when you have symptoms, and you should seek a review for new symptoms even if you have recently had a colonoscopy.
Symptoms to be aware of and report to your GP promptly:
- Gynaecological: Abnormal bleeding pattern (vaginal bleeding after the menopause, heavy periods, bleeding between menstrual cycles, and vaginal discharge). Unusual and persistent bloating.
- Urinary tract: blood in the urine or in semen, loin pain, new changes to passing urine (e.g. more frequent need to pass urine, a feeling of not having emptied the bladder fully, or poor stream of urine)
- Gastrointestinal tract: New and persistent indigestion, nausea or abdominal pain. Feeling full earlier than expected, or difficulty swallowing, fresh blood in the stools or dark tarry stool
- Skin: New mole or lesion that’s changing size, colour or is persistently itching or bleeding
- Other: any unintentional weight loss, feeling more tired than usual for some time, new and persistent headaches, persistently feeling sick (nausea), being sick (vomiting), especially in the morning.
Research Opportunities
There is lots of research going on to improve care for individuals with Lynch Syndrome. Please contact us if you wish to find out more information about a specific study.
PRESCORES Study - Open
This study uses questionnaires to collect data on quality of life in women in Lynch Syndrome, who have, and have not had surgery to remove the womb, ovaries and tubes. We hope the results will mean we can provide women who are contemplating this surgery with more information about the effects on quality of life, so they can make the right decision for them.
It is open to women 18 years or older who have not had womb, ovarian or cervical cancer. Please contact us to request an information pack if you are interested in joining this study.
EUROPAC - Open
There is a slightly increased risk of pancreatic cancer for some individuals with Lynch Syndrome. We do not have a proven screening test for pancreatic cancer currently. Some individuals consider joining the EUROPAC trial. This is a research study looking at how we can best screen for pancreatic cancer. There is more information at www.europactrial.com.
Profile Study - Open
This study is running at the Royal Marsden Hospital and requires individuals to visit London. It aims to develop prostate screening for men who have a higher risk of prostate cancer. It is open to men with an increased risk of prostate cancer who are 40-69 years old. There is more information at www.royalmarsden.nhs.uk/profile-study .
Please contact us to request an information pack if you are interested in joining this study.
Future Research Studies
We are expecting a nationwide study to open next year, which is looking at whether we can detect cancers in the kidneys, bladder and connecting tubes, using a simple urine sample. There may also be a similar study to detect cancers in the womb. Please keep an eye on this site for more information.
