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Lynch Syndrome Ireland Plea

Hi All,

Well done on your site.

We are struggling to attract families with Lynch Syndrome in Ireland to our group. We need to build our numbers to continue.

We would appreciate if you could direct any contacts to us through our web site...www.lynchsyndromeireland.ie.

Have you seen the recent USA initiative Cancer MoonShot?

Thank you.

Pat & Dearbhal

6 Replies

I am sorry I can't give you any advice, but hopefully someone can. Kittie

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I am guessing that you only have one reply because most of the OC and PPC women on this site dont have enough information on it. I did try to understand it by reading some info on the Internet. I just gathered that it is genetic and that if you had at least 3 blood relatives with mostly colon cancer you would be tested . Many other cancers are mentioned including endometrial cancer . Lots of questions spring to mind . 1 are you automatically sent for gene testing if you have the required amount of relatives ? 2 . Has it anything to do with the BRCAs genes ? 3 . How many people in Ireland have the gene ? 4 . If you do find you have it what is the next step ? This is the first time Lynch Syndrome has been mentioned on this site that I have read . I had briefly heard of it when I attended a conference in Dublin 2 years ago organised by the Irish Cancer Society in the Aviva stadium. I look forward to your clarification . Regards

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Hi Molly, Lynch Syndrome is a little bit like the BRCA genes but with Colon cancers being a higher risk. However, endometrial cancer and ovarian cancers are higher than the average population depending on the type of Lynch gene you have. Hysterectomies and Oophorectomies are advised once you hit your forties. It is inherited and genetic testing is done based on the family history you have & if someone within your family testing positive. Unfortunately, there is no database presently in Ireland of inherited genetic cancers, something we are trying to change but it requires funding! We are a small group but based on information gathering in the UK, US etc it is probably because we are underdiagnosed with inherited genetics being a relatively new phenomenon! Regards, Dearbhal

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Thanks for the detailed information in both replies Dearbhal. I would presume that having checked our family history If we didn't fit the criteria then there would be no point in mentioning Lynch Syndrome to us. I was diagnosed with Primary Peritoneal Cancer which I'm sure you have heard of. It's similar but rarer than OC. I am not a medical person but I'm sure if anyone else on the site is interested they will contact you


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Like hereditary breast and ovarian cancer syndrome, caused by mutations in the BRCA1 and BRCA2 genes, Lynch syndrome is caused by mutations in 5 different genes (MLH1, MSH2, MSH6, PMS2, EPCAM).

These genes are involved in the repair of mistakes that occur when DNA is copied in preparation for cell division (a process called DNA replication). Mutations in any of these genes prevent the proper repair of DNA replication mistakes. As the abnormal cells continue to divide, the accumulated mistakes can lead to uncontrolled cell growth and possibly cancer

Although mutations in these genes predispose individuals to cancer, not all people who carry these mutations develop cancerous tumours.

In addition to an increased risk of colorectal cancer, individuals with Lynch syndrome are also at an increased risk for cancers of the:




Small intestine

Plus a number of other areas.

What are some red flags for Lynch syndrome?

1. Three or more closely related family members with colorectal, endometrial, or other Lynch-associated cancer (mentioned above).

2. Cancer diagnoses in two or more generations.

3. A family member diagnosed with colorectal or endometrial cancer before the age of 50.

These features are often referred to as the Amsterdam criteria. However, not all families that meet the Amsterdam criteria have Lynch syndrome.

A family member with cancer gives their consent to have their tumour tested. Based on this result, they may be offered genetic testing to find the fault on the gene.

If a fault is found in that family member, then genetic testing can be offered to other members of the family. It is up to each family member to decide if they wish to be tested or not.

We do not know how many families in Ireland are affected but we are reasonably sure that it is largely undiagnosed.

If you have been diagnosed with Lynch Syndrome regular screening will be advised.

Main screenings:

Colon (large bowel)

Womb and Ovaries

(Some women with a high risk of getting cancer and who have completed their families can decide to have risk-reducing surgery. This involves removing the womb and ovaries)

Stomach screening.

Hope this is of some help.

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thanks for all the information. I had endometrial cancer and I had surgery last February. I'm 54 . As I told my oncologist of my family' history with colon cancer he asked testing on my tumor and then I was diagnosed with Lynch Syndrome. He also referred me to a Genetist and I have been waiting to get an appointment.

My father died last summer with colonrectal cancer at 80yo, but he had his first colon cancer when he was 28.

I think that with his history and the one of his siblings (all with cancer issues) an my grandfather who as well died of colon cancer, nobody ever suggested a test for Lynch Syndrome.

I hope to know more once I finally got an appointment with the genetist . I will check your website.



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