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Up to date information on Lynch Syndrome
Category: Genetic Testing
Lynch Syndrome
- Lynch Syndrome involves several inherited genes which normally protect the body from cancer, but mutations in any of these genes may inhibit this function.
- If someone has a Lynch Syndrome mutation it does NOT mean they will definitely get cancer, there are other factors involved.
- If you have one of the Lynch Syndrome mutations, this has implications for your family. Your elders, siblings and offspring. If they too have the same mutations, they will be more susceptible to bowel and other cancers.
- You should contact members of your family and advise them to get tested.
- Anyone with Lynch Syndrome can reduce their cancer risk.
- People with Lynch Syndrome are entitled to advanced cancer screening, to catch cancer early and cure it.
- There is evidence that some people with Lynch Syndrome diagnosed with a bowel cancer are more likely to develop secondary cancers.
What is Lynch syndrome?
Lynch syndrome (LS) is a genetic condition that is passed on between families (inherited). A syndrome is a group of signs and symptoms that occur together and point to a particular condition.
Most people who have Lynch syndrome are well and don’t know they have LS.
However, someone with LS is more at risk of developing certain types of cancer than other people of a similar age.
Men’s Health
Check out our Men’s Health hub, full of helpful tips for healthy living and how to #SpotCancerEarly at: https://brnw.ch/21wKBEG
Also…
Many men with cancer in the family worry that they are at greater risk of getting it themselves. But this isn’t the case for most people. Cancer is a common disease among older people, so most families will include at least one person who has had cancer.
5 – 10% of cancers are linked to an inherited gene fault.
The strength of your family history depends on:
- Who in your family has had cancer.
- How old they were at diagnosis.
The more relatives who have had cancer, and the younger they were at diagnosis, the stronger your family history. You may have a strong family history if any of these situations apply to you:
- More than two close relatives on the same side of your family have had cancer.
- The cancers developed when they were young (under the age of 50).
- One of your relatives has had a gene fault found by genetic tests.
What should I do if I have a family history of cancer?
Talk to your doctor who can help you find out if your family history of cancer is of concern. Your doctor may suggest that you visit regularly for screening. In this way, you can pick up problems early.
Your family history of cancer can change over time, so it is important to keep your doctor updated about any new cancers diagnosed in your family.
New bowel cancer screening launches for Lynch syndrome patients in England
A new NHS testing programme for bowel cancer has been launched for people with Lynch Syndrome, following an initiative to increase genomic testing for the condition.
Around 10,000 people with Lynch syndrome will start receiving invitations to take part this year.
Dr Kevin Monahan, who led the NHS England Lynch syndrome transformation project, said: “Incorporating people with Lynch syndrome into the national colonoscopy screening programme is game-changing and will save many lives each year.
It will deliver prevention and early diagnosis of bowel cancer through timely and high-quality colonoscopy. Now diagnosis of this hereditary condition in England will be linked to lifelong patient-focused care.
What I Wish I Was Told About Lynch Syndrome
“The most challenging part of dealing with Lynch syndrome for me is the uncertainty surrounding my son’s health. The fear of him possibly inheriting the mutation gives me anxiety, especially since he hasn’t been tested yet. If it were solely about me, I might have approached things differently — I may have postponed my prophylactic surgeries until after achieving menopause.”
“I didn’t have to face Lynch syndrome alone after realizing that support is always available. That support system, as well as staying ahead on check-ups and focusing on my wellbeing, guided my path after being diagnosed.”
The landscape of Lynch syndrome has significantly evolved over the past decade, with advancements in genetic testing, universal screening and predictive models improving early detection.
https://www.curetoday.com/view/what-i-wish-i-was-told-about-lynch-syndrome
Ovarian cancer: identifying and managing familial and genetic risk—summary of new NICE guidance
https://www.nice.org.uk/guidance/ng241
What you need to know
- Men and people born with male reproductive organs have a genetic risk of carrying a pathogenic variant associated with ovarian cancer and other cancers
- If a person had a direct-to-consumer genetic test and is reported to have a pathogenic variant for which NHS testing is offered, liaise with a regional NHS genetics service to discuss whether referral is appropriate
- Refer for genetic counselling and testing people who have a first or second degree relative diagnosed with ovarian cancer, those from high risk groups, anyone identified through cascade testing, or those diagnosed with ovarian cancer linked to pathogenic variants
- For women, trans men, and non-binary people born with female reproductive organs who are at increased risk of ovarian cancer, risk reducing surgery that is age appropriate for their pathogenic variant or family history is the most effective way to reduce the risk of ovarian cancer
Innovative eMERGE study aims to address historical health inequities
Collaborations like the eMERGE IV study can help show how diverse population screening, better communication of test results and integration of genetic information into health risk reports can improve our understanding of how to reduce health risks for all.
No guidelines exist for proactive genetic testing to understand overall health risks in otherwise healthy individuals with no family history of disease, so comprehensive risk assessments that include genetic testing aren’t yet standard practice for most healthcare practitioners.
“Uninsurable because of a genetic test”: a qualitative study of consumer views about the use of genetic test results in Australian life insurance
Genetic testing can provide valuable information to mitigate personal disease risk, but the use of genetic results in life insurance underwriting is known to deter many consumers from pursuing genetic testing.
Many countries have restricted the use of genetic test results to assess individuals for risk-rated insurance products. Canada adopted the Genetic Non-Discrimination Act (GNA) in 2017, which prohibits the use of genetic information in services including insurance, with no exceptions or financial limits.
Participants stated a strong preference for government regulation to ensure adequate protection against Genetic Discrimination in life insurance and provide certainty to individuals considering genetic testing. The Australian Government is now considering its policy response to its public consultation into the use of genetic results in life insurance underwriting.
Small Study: Results show low trust in the life insurance industry’s self-regulation, and strong support for legislation from the Australian Government. Even after the introduction of the moratorium, these consumers remained concerned about the implications of their genetic test results on life insurance, and these concerns affected decision-making about genetic testing. Participants also showed little knowledge of the moratorium, or were concerned about others not being informed about it.
Survey about Motivations and Barriers to Talking with Family Members about Inherited Cancer Risk
This study aims to understand the different goals and motivations individuals with an inherited gene mutation have when talking about their genetic cancer risk with family members in a conversation.
To participate, please email the study coordinator at cancercomm@usf.edu for the link to the online survey.
Lynch Syndrome Ireland 