Lynch Syndrome Ireland

Hi All,

Keep up the good Work.

We are still trying to attract families with Lynch Syndrome in Ireland to our group. This is important in order to continue our work.

Please direct people to our Facebook page or they can email us at [e-mail].

See recent article on Irishhealt.com...irishhealth.com/article.htm... to 15,000 people in Ireland may have this genetic defect and less than 5% are aware. Perhaps more people are affected than those with the BRCA defect.

Thank you for taking the time to read this message.

Pat

[gemmamckevitt]

Dear Pat,

It is only very recently that I heard of Lynch Syndrome. My father was diagnosed with colon cancer in November 1984 and died in February 1986. I was diagnosed with ovarian cancer in May 2003 and colon cancer in March 2007. Lynch Syndrome was never mentioned to me, though the colo-rectal nurse I was dealing with mentioned that my cancers were most likely hereditary as I had an otherwise healthy lifestyle. I have no siblings or children. I was at an Ovacare coffee morning last Saturday and I mentioned this to Sharon. She suggested that I might contact my consultant in St. James Hospital and ask if I needed to do something. You may be able to advise me.

Thanks,

Gemma

[Hidden in reply to gemmamckevitt]

Hi Gemma,

WHAT DOES BEING TESTED INVOLVE?

For people who have been diagnosed with bowel cancer, testing for the condition usually involves a three-stage process:

PROVISIONAL MOLECULAR SCREENING TEST. If Lynch syndrome is suspected a simple screening test (also known as a molecular test) can be carried out on the patient’s tumour tissue to identify if they are likely to have Lynch syndrome. This test looks for changes in the mismatch repair proteins.

GENETIC COUNSELLING. Consent is needed before genetic testing can take place. Before consent can be given a person suspected of having Lynch syndrome is required to see a genetic counsellor who will talk through the process and offer information, advice and support.

GENETIC TESTING. If changes to the genes are detected by the provisional screening test, the individual will be referred for full genetic testing to have their diagnosis confirmed. This involves a simple blood test and confirms that a change in the gene is present. Usually this takes around 6-8 weeks.

I’VE ALREADY BEEN DIAGNOSED WITH BOWEL CANCER, BUT WASN’T TESTED FOR LYNCH SYNDROME. CAN I BE TESTED NOW?

If you have any concerns about Lynch syndrome following a previous diagnosis of bowel cancer, you should speak to your Consultant/GP who can refer you to a genetics team. Bring as much information about your family history, including who in your family has had bowel cancer and/or other types of cancer. This will provide your GP with a strong case of support to refer you to a geneticist.

David Gallagher is the geneticist at St James's. There may be a delay of a number of months.

Hope this is of some help. Best of luck.